I have an invisible illness and exhaustion is one of the symptoms. I find it really embarrassing if I’m on public transport and I need to sit down but because I ‘look fit and healthy’ I find it hard to ask or when someone elderly needs a seat if I can’t stand for them (and I do if I’m not having a flare up) then people look at me like I’m the devil. Sometimes I fake a limp or something as I get off the bus and I see people thinking ‘oh, ok she is disabled’. I shouldn’t have to do that but the judgement if I don’t is worse.
I've got an invisible illness too. You asked for advice on how to respond when people ask how you're doing. I have learned to cater my response to whoever is asking. 100% open with doctors and the people I'm closest with. With other people, unless I actively need help in the moment or am struggling to walk, it's usually something of "I'm taking it day by day, I'm doing ok, or I'm hanging in there". Also if it's not someone you're really close with or someone who just doesn't get it, it's a shorter response. If the fatigue/other symptoms are horrible that day, it's I'm fine. No need to use more energy on people who will never understand. You also mentioned feeling like you don't show up enough for friends and family. Something I read recently is that the moon shows up every night, but it's not always full. And the ocean is always there, but sometimes the tide is low or high. So show up when you can and how you can. The people that actually matter will adjust to the new normal and accept you for who you are.
I have an invisible illness - Fibromyalgia and every day is different. Having a flare up at the moment and on the outside I look “fine”. It sucks. People need to be kind to others regardless and hopefully the world will be better for invisible illness sufferers and all. Sending love and strength ❤
All of us with invisible illness tend to "mask" our feelings, pain and fatigue. Its unfortunate, but it seems to be something we need to do to survive society. Fatigue can be so debilitating, it can be hard to judge your own energy levels. No matter what you are living with it is different for everyone - people don't seem to get it. You should never feel guilty, we have to change to deal with our struggle, its them that either don't or don't want to understand. I had to lower my expectations in a number of areas of my life, I was told to sop working by specialist to cope with the basics of life. (by the way, I do not have MS). Just do the best you can with what you have now.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Yes! One of the worst symptoms for me with my auto-immune is the fatigue! And how quickly it come on. One minute or one day you’re fine, and the next you’re so tired it’s hard work just lifting your arm! And then people tell you “it’s this time of the year” or “yes, but everyone is tired after the stress of covid”. Nobody seems to understand.
I totally feel this also. People tell me "it's that time of the year" but how would they know?. I'm in pain more than most people around me. I also have auto immune disease. I feel sad and other people are living life around me.😢😪
I have many mental health problems, on top of physical illnesses; but worst is never ever being able to wake up feeling rested. My mornings are sooooooo difficult. I feel physically worse than when I went to bed, so my mental state is awful as well. Once that is over - can take up to 3 hours for the darkness to disappear, the body to adjust to being awake etc., I then face the reality of all the losses in my life. Jobs, income, travel opportunities, relationships, friendships, hobbies etc. but then I go out and I'm surrounded by stray cats here in Istanbul, and I am the happiest human on the planet. It is pure joy being with them, taking care of them, giving them love. And LOVE is everything. Be kind to yourself and love as much as you can. 🥰
I also have a neurodegenerative disease. You're so right about how healthy people don't understand fatigue. I got through to a few people in my life by looking them dead in the eyes and describing it like this: It is fatigue that is so heavy, I feel literally paralyzed. Literally. My husband would pick me up off of the floor and put me in bed. I was unable to correct the position of my body or wipe the hair out of my face. I was so tired that the effort to move my eyes in my skull felt demanding. Breathing feels exhausting. --And the brain fog was so severe that I couldn't read or write for months. I forgot how to tie my shoes, got lost in my own house, and didn't know what my dog was or why he was in my house. I'm doing infinitely better now thanks to Cleveland Clinic!!
Grief is a really large part of chronic illness. Grieving who you once were, what you once could do and or what things you’ll never experience or have because of the illness/ess. At least it has been for me. I really appreciate everyone and any one sharing their experiences. I wish we could all just be well together, not needing to bond over such a topic. And yet it is a comfort to find people in similar situations, since that is often not the case in ones real life. Being understood is so important, thank you for sharing Elin ❤
I hear every word you say!! You hit the issue perfectly!!After pushing myself to work through the horrific pain, fatigue and dizziness, I finally had to apply for disability as I could no longer work even an hour most days. It’s so unpredictable. Some days, I can walk a mile or two. Sometimes, I don’t have enough energy to eat, drink or get to the bathroom. You’re right about who to tell. My family, which have been great, don’t even understand. Only my husband and kids see the “real” me. I finally collapsed and ended up in the hospital whenever I tried to work. I’m now on disability, which is very embarrassing to me. I, like you, look perfectly healthy most of the time. I also try to be impeccably groomed so as not to make people feel uncomfortable, but when I go to the doctor, I now never wear makeup and leave my hair uncombed just so they see what is going on. Their attitudes change based on how I look! Hang in there-you’ve made me feel less alone.
I think your feedback is true for all suffers of chronic illness. People really don’t get the struggle unless you are having an issue in the moment. They stop wanting to ask you how are you doing because they are afraid of the response. I too have started to tailor my response to my audience due to this fact. You definitely feel less genuine but I feel like I scare people due to the fact that my condition appears on the surface to be no problem.. to them.. because yes I’m able to work and appear to have energy but when I go home I can’t do the thing I use to I’m exhausted.. this video validates how isolated people with chronic illnesses feel.. I like how you stated we feel left out or falling behind …. This is so true… with my condition I’m not able to eat solid food and this has been a big issue for me. Some social settings revolve around sharing food and I not only miss this but feel I’m missing out on the people connections involved with eating a meal. I have tried to eat and talk during a meal and people tell me they feel awkward due to me not eating so I usually step away or do not socialize at all. Thank you I found your video very helpful.. I saw it at the right time.. I needed it 😊
Thank you for this wonderful video!! I have been living with ME/CFS for the past seven years and you took the thoughts right out of my head!! (You definitely didn’t take the words right out of my mouth, as there’s no way I could be as articulate as you!!) I wish you all the peace, happiness, love, strength, and health in the world! 😘
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing this. I also have an invisible illness called Idiopathic Intracranial Hypertension & can really relate to everything you said. The symptoms, the hospital bills, the dismissive doctors, the meds, not being able to work or keep a job for more than a year….. I got diagnosed 2018, had brain surgery last year & live day by day. Really needed this today.
so relate to the isolation and feeling invisible. I'll see a mate and they're like "what have you been up to lately?" even though they know I have cfs, it's not that I feel bitter for them for not knowing that I spend all day doing literally nothing ! but it's more just feeling completely misunderstood. like people know I'm sick but they cant actually comprehend what that actually looks like day to day. so relate to feeling like you can't really met people where you're actually at and feeling like it lacks that transparency but then not wanting to show too much. bless you for sharing this. 🙏
Thank you, thank you for this video. After over a decade of specialists, symptoms, and frustration, I was finally diagnosed with Lupus last December. Everything you talked about resonated so much with me. You conveyed ALL of the things that I am currently feeling so much better than I ever could. I will be sharing this video with my family, friends, as well as the community of women I work with through social media. We are all the mothers and caregivers of adult children with autism and comorbid disabilities. Every single one of us now lives with a chronic illness. I don't view this video as negative in any way. It is a reality too many of us live with and is validating and very helpful. I hope you consider making this topic into a series. I actually started pursuing minimalism a few years ago to help manage my anxiety, conserve my energy, as an act of self care, and in preparation for what the future may bring.
Hey there, greetings from Poland. I'm leaving this comment here just to let you know that this video has made me grateful for all the energy and health that I have to take care of my home on daily basis. Your talk has made me more appreciative. Instead of complaining about my chores, now I'm thankful that I can actually perform them without any health problems. Thank you and I'm sending you lost of positive, uplifting and healing energy 💙
No for me it is not sending negative energy, it is teaching us about health, about opening up, trust us as youtube community and if anyone is sending any sort of negativity then delete those messages. We are all here for you and for each other ❤
I really appreciate you doing this video and sharing your story. You’re not complaining. You’re living with an illness and it’s important to share, it’s important for all of us to share our experiences so that we can learn from one another and lift one another up. Everyone is different. Everyone’s health journey is different and the only thing that we can do is to do our very best, listen to our doctor and listen to our body. I just want to send you love and light and to everyone else who is living with a chronic illness, I love you ❤️
My chronic condition is very different from yours, but it does result in periods of time when I'm in constant pain. I also struggle with being authentic about that, using a cane in public, allowing people to lift/carry things for me, etc. It's hard to know that some of my favorite activities will always be off limits; I'll never run again, for example. Then there's the whole issue of pain medication, which ones work for me, avoiding addiction, etc. Anyway, thank you so much for making this video and opening up the conversation. Wishing you a "good MS" day. ❤
I get it. I've lived with MS for 38 years so far. It has helped so much to be part of a support group - we still connect even though we live on opposite coasts. So helpful to talk with others who understand.
Thank you for this video. You articulated this perfectly. I’m three years into my chronic illness, pain, imbalance, vision losses and fatigue. Really feeling like I lost so much interest and vitality.In my life. Struggling to get back into living but the constant revolving isolation, anger, and pity are hard to get past.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I was born with a brain tumor. It has caused strabismus. It has caused surgeries of being crossed eyed 3 times. Still my eyes to still not be straight. Challenges with Crohn’s disease. I just had another brain tumor. I am recovering from surgery as I write this. I have never had been crying about my illnesses. I just go with the flow. I guess something that has helped was a beautiful loving mom. She knew how much I struggled in life. Now my strength comes from the God. God Bless You and , stay strong. We all go through challenges. It sucks. 😊
As the parent of a child with complex, mostly invisible medical diagnoses, this video is very validating. I can relate to so much of what you shared. Thank you for making this video!
I cried while watching this. You put into words all the struggles I, and many others have. I suffer from CPTSD and have been diagnosed as 'high functioning ', which basically means I'm a fricken good actress at playing the "I'm fine" persona. I tried being honest with a friend about my struggles and why I had to cancel our get together, it was a disaster. Pushed me right back into the I'm fine person. It is so so hard to be honest, for all the reasons you pointed out, so I am truly grateful for you having the courage to make and share this video. Thank you so much.💚
Thank you for this comment. I'm currently going through losing a friend because of years of invalidating me and my symptoms. That feeling of trying to be honest with friends about why I need to go home, or cancel, etc. I remind myself true friends would not care or judge, but after years of trying to be honest and getting met with anger or annoyance, it's hard not to not let it hurt. Thank you for your comment and your courage as well.
@officersonic3014 Thank you. Much love to you, just know you are making the right decision for you. It hurts, but it gets better and you will feel freer and less burdened. It's hard trying to be what someone else wants, exhausting in fact. You take care of you. 💕
Thank you for making this episode. I have a few rare diseases that are invisible illnesses, while I don't have MS I identify with so much of my this. Its honestly nice to hear the struggles so I know I'm not alone and I'm not the only one having these thoughts. I've been disabled for 3 years and the grief and adjustment are real. So is the struggle with getting through applying with disability and seeing doctors, paying for meds and everything else. Much love to you friend. Thanks for sharing your light. 💕
You are beautiful and so well spoken. Thank you for being vulnerable and sharing your truth. I do not have a chronic illness but I’ve been following you for a “Slice of Light” in my life, and my heart hurts for you since I learned about your diagnosis. Hugs to you and Andy! I’m so glad you have each other! 🫶🏻
Thank you for this video. I was shaking my head yes through the whole thing. I have MS and it’s hard to let people really know how you feel. I know they look at me (not all people) and think nothing is wrong with me. Praying for you. ❤
I don’t think I have MS but I have struggled with autoimmune disease starting with Reynauds in my 20s and developing more and more over the years. I have just been diagnosed with another one, Sjogrens, lately as all my teeth have broken off like icebergs. I totally understand what you are saying. I am alone. If I have to go somewhere like a doctor, I try to make myself presentable and good and automatically others think there’s nothing wrong with me. I have a team of doctors and specialists and I get all that unsolicited advice to. It makes it so hard when people do this. It is such a struggle with the ‘invisible disease’. I’m sorry about your diagnosis. I know how hard it is. At first that’s what they thought I had. Most of the time it takes so long while they ‘rule out’ other things. I am not the person I used to be because of this. I worked for 30 years as an Advanced Practice RN before this happened to me. It was 2008 when docs finally said ‘no more’. Of course, that’s when the market crashed so I also lost the 30 years of savings for retirement I had worked hard for. Symptoms affect functioning and you lose friends because you can’t always participate. There is much more research needed in this area. Glad you made the realistic video.
Hi Elin. Thanks for sharing. I am in week 4 of a neuroplasticity program called DNRS that is helping me overcome chronic health problems (not MS). From day 1 I saw a difference in my symptoms, and I previously was the world's biggest skeptic! I would be doing you a disservice not to tell you about this miracle therapy. Even if I had MS, I would dothis program. There is nothing to lose.
Thank you so much for opening up to the invisible sides of chronic illnesses. Makes me feel less alone. Pain and fatigue are very real and invasive. I too struggle with when to say what about my illness and symptoms. I tend to ask too much of myself, but paying the price later. Also I sometimes feel quilty for being a wife and mother with disabilities. It affects not only me but everyone around me. That's hard. Specially for my husband, although he doesn't want to hear me say that I sometimes feel like a burden. Also, every day is different and you keep adjusting to how it is going. On a more positive note, I am very thankful for the love and help around me. Sleeping 8 hours at least, trying to find a balance between resting and activities, learning to say no to things and people have helped me. Not perfect at it myself all the time, but I am trying. Sending you lots of love and light. Thanks again for your videos, you are in my thoughts and prayers. ❤️
I’m listening to you describe EXACTLY how I feel and the symptoms I experience too. The fatigue, the always dizzy to varying degrees. The fluctuating vision issues and symptoms throughout my body like numbness and tingling. Yep I totally get it and I feel very similar. You have described what I endure daily better than anyone I’ve listened to. I feel anxious about it too and mainly push that away and just go about my life best I can. Thank you and take care! 🌻
This resonated with me SO much. I have isolated myself over the years from friends because it eventually gets exhausted hiding how I feel 😢 (I have chronic pain from severe scoliosis and epilepsy). Whenever I have flares I too feel so so guilty or a failure for not being able to do as much as I used to or do things I want for people but physically can’t! Im trying to have more compassion for myself and not beat myself up 💖 Thank you for this video
OMG! You said it exactly! I have Fibromyalgia and I’m Type 1 diabetic. People give so much unsolicited advice. I’ve had this for 26 years and I am so tired of hearing people that I have went into myself and I am not the person that I used to be. I wish people would understand that we have tried everything. I’m also happy that you know a friend that works every day, blah,blah,blah… I worked for about 12 years until I just couldn’t anymore. I’m just tired of hearing the crap from everyone about me, so I say nothing. I’m fine…and just leave it there. Bless You!
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Im in constant daily pain from chronic illnesses. And i haven't found anything that helps me sleep. It would feel so much better if i could just sleeeep. Ive tried it all. Anyway, this video helped me.
Thanks so much for this video. I also live with multiple invisible chronic illnesses. I almost cried at times as i recognised what I live everyday in what you are describing. It was an amazing video thank you again
My husband suffers with chronic pain. Some days are better than others. People don’t always understand . It took me a long time to admit/explain this to my closest friends. I felt better once they knew. Sometimes we can’t accept an invitation because we don’t know how he’ll feel. It’s been a relief to know people understand
I’m a creator with a chronic illness and only just told people about it …..I just couldn’t take it anymore. I kept trying to heal it, get back to who I was and it took me so much to accept that I’ll never dance again.
I’ve had fibromyalgia and psoriatic arthritis for 37 years. I doubt many people have the type of fatigue that feels like your last drop of blood is draining out of you. I don’t feel that this video is at all negative. You are stating reality and I appreciate that. There’s so much toxic positivity from able bodied people who seem to expect people with a chronic illness to function at the levels they do.
I felt your words so much: "like your last drop of blood is draining out of you." I have Hashimoto's Thyroiditis and Non-radiographic Spondyloarthritis (positive HLA B27), and my chest has been hurting the past few weeks from constantly pushing through all the stress and pain in my body.
My husband had a stroke 3 1/2 years ago. I am his caregiver 24/7. His illness is both mental and very physical. People are always very kind to us when we go, but it's tough always being the conspicuous people. Thank you for providing a platform where we can talk about struggles and hard-core realities. Please, use your channel and your audience as an outlet as much as you need to or want to. It's about being a real community of real people.
I struggle with chronic gut issues (small intestinal bacterial overgrowth, gastroeshopageal reflux disease, and IBS) - some of those are supposed to be treatable, but the treatments don’t work for me. It really impacts my life, I can’t eat many foods, I often have stomach and joint pain, fatigue, I get an upset stomach easily. It really restricts my life. Thank you for making this video. Everything really resonated with me - especially just struggling with the physical symptoms, the sense of isolation and loss from what my life could have been without those issues
I really appreciate the honesty, I believe that truth and honesty are important, talking about frustration, sadness and just expressing painful feelings is healing. Thank you for sharing ❤
As someone who struggles with a couple of chronic issues that have completely changed my life, I really appreciate your message. Life gets tough and we struggle. Years after being diagnosed, I still can't seem to completely accept it. I believe there is wisdom in me and that one day I will be more at peace with it. Many warm wishes from another ex-academic :). Thank you for sharing.
Thank you for your vulnerability. I'm a recovered Lyme warrior. I've experienced everything you mentioned here. People need to know they are not alone and you just beautifully outlined it all.
This was a brave thing for you to put out and I didn't find it negative at all but uplifting. I was 52 when I was diagnosed with Multiple Myeloma, a blood cancer. Honestly, I was shocked because I had always been so health conscious. I have been in and out of treatment for 17 years and currently am facing another relapse. I try to stay positive but there are times when I just get depressed and I just sit with it. My family has been a great support especially when I went thru a SCT( stem cell transplant). The fatigue is/was a real thing and I'd say be kind to yourself and do what you need to do even if it means disappointing someone else. Take care and thanks for this video.
My mom has had MS ever since I was a kid. It is so eye-opening for someone like me watching this, this really helps me understand her better. Thank you for sharing this! One thing I might add is that for her, it was accompanied by clinical depression, and that caused her to be even more stressed which in turn caused her MS to get worse over the years. Fortunately, eventually, we were able to diagnose that and take the depression and consequently, the MS under control and sort of stabilize her condition.
I can relate with you. I have RA, it's been two years, I look fine and people assume I am okay, sometimes it's hard to socialize and I cancel a lot of plans. They think I am making excuses, they don't understand often what I am going through.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I don't have MS (I think... I was assessed for it so many tears ago, and haven't really gone to a doctor in many years), but my symptoms are basically the same as yours. I could have written what you said, myself. Today is a hard day, and it meant a lot to hear another human who intimately understands what this feels like.
Something that helped me with talking to others about health is have your people you talk to and who you’re authentic with so that way when someone asks who you wouldn’t really go into detail with, know, you already have your people and to have grace for yourself. You don’t need to share and give 100% of an answer to every single person. That will wear you out. Be authentic to the people who are going to hear you and give back to you in a way that lets you know you’re heard.
Only a handful of people at work know about mine and sometimes I feel like I’m living a lie. I don’t want to necessarily hide it but there’s no good way to state it to them. Also I’ve gotten the “my old coworker had ms and she went down hill so fast.” Um they don’t mean it that way but it can be so hurtful. I’m also worried it’ll create more fuel to the antivaccers. Also depending of what dmt you’re on, you can sign up for a co pay assistance program, which has been amazing.
This video made me feel way less isolated in this illness. I feel like this video explains all the things I have a hard time telling family and friends. Thank you ❤
The hiding and inauthentic part is very hard and like masking- tiring-…. Very very hard - imagine if you were having a stroke or dizziness and nausea or severe panic attack and so much worse- Otis just very very hard to be normal or even “present.” It takes a LOT of your living experience and actually diverts it to isolation and self.
You expressed this so well. I have many chronic illnesses and experience some of the same symptoms as you. People don’t get it, and I often feel like I’m complaining or people don’t really care. I completely understand not knowing how to do with it all and adjusting.
Wow, I really needed this today, June 13, 2024! This was amazingly helpful to me! Your words resonated with me, immediately. I'm a walking timebomb, with chronic heart failure. Doctor's don't give me much hope. However, I am still here. I explore alternative methods of healing that have me feeling better than doctors said I would. I do feel invisible and feel like I can't be honest with people about what is going on. You have encouraged me greatly ❤
This is so helpful. I kept thinking about how we don’t really know what anyone is dealing with at any given time and hearing your story helps me to remember to simply be kind and patient and helpful to everyone I come across. Thanks for being so transparent. Appreciate you!
Appreciate your honesty. Just know you are in my prayers. I relate to many of your struggles. My faith in Jesus is my strength. Thank you for making this video.
The feeling that resonates with me the most is grief, of losing who you once were. This feeling of grief is the same as losing someone, except you are reminded of it every day, and it may even get worse with time if you health continues to decline, reaching lower and lower levels, as what little you have left is slowly stripped away. Despite this, understand that you mean something to someone. Continuing to go on may feel impossible, and although it's undoubtedly a sacrifice, it's one worth making, because if you can lift up just one person, then your life has a meaningful purpose.
Thank you so much for sharing. I’m sure it was tough to do so. I’m glad your husband is so incredibly supportive. That is priceless. Sending you all the love and strength. ❤️❤️🤗
I also have an invisible illness in which some of my most problematic symptoms are fatigue, and brain fog. I'm 35 now and have struggled with it my whole adult life, and as a result have not been able to work full-time for longer than 6 months at a time. The hardest part is not having money to enjoy life because I can't work. My illness is considered a disability in some countries, but not where I live. I have applied for disability once and been denied. I might try again, but for now this means me and my boyfriend live in a crappy rental home with 3 other people (so 5 altogether). It sucks... I had dreams. I wanted a career, a house, to enjoy my hobbies. Currently there are no effective treatments for my illness (PMDD), and I'm so exhausted from trying all the things over and over again hoping something will help enough to help me live a "normal" life. I don't know ... I'm having a really hard time. I'm currently looking for work again, but I don't honestly know if I can do it.
I have an invisible illness and this video resonates with me so much. Even though I have a totally different condition, it affects my every waking moment in some way or another. One of the hardest parts for me is accepting that I have this after being not long ago a fit and active person, and accepting that there is nothing medically currently that can be done about it that hasn't been done, and unless some new treatment comes out there will continue to be nothing, and so accepting that and that the symptoms I get will most likely stay the same indefinitely.
Thank you. I struggle with guilt constantly. I was a competitive gymnast who rode dirt bikes & kept up "with the guys". But now everyone assumes I'm making up symptoms or I couldn't possibly be in as much pain as I say I am or have been. The frustration builds up and causes more physical symptoms. Still working on breaking that cycle.
My spouse is chronically ill and dying. Looking at the NOVA film on Dying is not easy to watch. But truthful. One ting the video was informative and thought provoking. What may help you feel better of the word Disability is condition which i is disabling. It is a inconvince .
this is an extremely good video....there is not a single bit of negativity. it is full of genuine personal experiences which you share with us and we fully appreciate it ....
Thank you, you voiced so much of how I feel and after twenty years of pain from FM, CF, depression plus other invisible illnesses I still am struggling. You have a lovely voice and manor, it was very comforting to hear your thoughts. I wish you well with your illnesses, I look forward to hearing more from you. Many thanks.❤❤
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤…
It's refreshing to hear someone being honest about their struggles and symptoms. Big difference between negativity and being open about what the reality is. I didn't catch any negativity from this, you are handling your chronic illness very well.
Thank you for making the video, incredibly encouraging! I have Ataxia, which very similar to what Mutiple Sclerosis is. It is scary and like you said lonely unfortunately. It's refreshing to see someone authentically talk about these difficult issues.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
There definitely does need to be space for negative feelings and discussions about disability. As a disabled person, i only saw people posting the positives and it made me feel like i was doing something wrong in my life because i couldn't go out and do stuff like all these disabled content creators. But when you find someone actually being honest, it helps you understand that, a lot of people are going through the same thing as you, you aren't doing anything wrong, you're just doing what you CAN.
I want to validate you and how you feel. All very normal and you are not alone! I started having similar symptoms when I was young and I'm 61 now. I went through all the tests for ms and they couldn't come to a conclusive diagnosis. They said I probably had something that they just didn't know much about yet and couldn't test for. I have spent my life with all kinds of random symptoms, some similar to yours. Fatigue being a running thread the whole time. It's been so unbearable at times. A component of my personal struggle is that my husband forgets when I look ok or don't say anything! I believe he is on the spectrum. I haven't been as lucky as you to have friends that understand or even want to know more and I am exhausted at trying to get them to have a better understanding. So count yourself lucky in that department. I cried at the end of your vlog about your future not being what you had imagined. That happened to me. Please share anytime, I imagine that helps and I will always support you. I hope more help comes for people with diseases like ms. I hope your future is good and bright. I will think of you when I pray today🙏
Thanks for sharing. I'm 58 and previously doctors just said things like, it sounds like you've been very busy, or it sounds like you're depressed. But about 2 years ago, I found a family practice where the PAs and the NP really listened and did further testing. But now it's like I'm finally even able to say to myself, no it's not in your head, I have 2 autoimmune disorders, in addition to the allergy problems. Sometimes I wish I would just be healed; I guess I'm still grieving. And looking for what possibilities are still there.
🌹 well done sweet thing...I am 71 and 24yrs in with PPMS and totally appreciate your own personal journey and how well you presented your thoughts..Ģod bless you ❤
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Elin, thank you sooo very much for being so vulnerable you nailed how I feel. I am ill and I live alone and have no family or friends do to my condition. I just needed this today. I am sorry that you have this awful illness. Sending prayers.
Thank you for sharing your story. I have been dealing with an undiagnosed condition for a few years now and it gets worse whenever it wants to. I'm terrified of how bad it can get in the future. Trying to live one day at a time....
You are not alone! Since the birth of my daughter twenty years ago I have suffered from heavy depression and anxiety … another invisible illness. A couple of years ago I decided to live a life without permanent medication (an option you don‘t have). What helps me in the dark moments that can last for days or weeks is a breathing technique from Yoga and autogenic training to calm down. I also hold on to the thought that better moments will come ( sort of a Mantra). And I allow sadness and anger about this illness to be a part of my life. In good moments I can enjoy life so much more … it‘s precious! All the best for you from Germany!
Two things helped me when I was very ill.: One was wearing a necklace of a certain color depending on how I was feeling. I had 5 different beads I would choose from... from white (almost no pain/symptoms) to black (incredible pain and horrible symptoms). That way I could let people know how I was feeling that day without always feeling like I was "whining" or "complaining" about what was going on. (And talking about our illnesses is NEVER whining or complaining. We are communicating.) The other was blogging. I understand that not everyone has that ability because of pain or other symptoms of their issues, but a Vlog or a Blog about the illness/disability/life experience can be an amazing catharsis as well as a connection to others. I am so proud of you for speaking up and out about MS. It's in my family and I understand the vagaries of the disease from a different vantage point. But your experience is yours. Embrace this season in your life when you can... yell at it when you can't... and share when and where you are able. You are being heard.
You are sooo wonderful to do this for those of us who are suffering the same. I’m in tears knowing I’m not alone in dealing with people’s reactions-especially family.
God thank you so much for this honest video. I needed someone else to say out loud everything that I've been feeling with my chronic pain these paast 4 years. Thank you ❤ I hope you start feeling better and better every day.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing, I am so sorry to hear about your illness. I was diagnosed with an invisible illness 7 years ago. I am older than you, in a different phase of life, so I recognise that my situation is different, But still I recognise everything you said. I have stopped working, and am now doing a PhD in art history in my own time. (I heard your story and I think you were very wise to choose you over an unwanted career path.) I need to work towards something, and this I can do - as long as it is in my own time - and it gives me joy. I have good days and bad days, good weeks and bad weeks. The fatigue is the most disabling for me. And honestly, people just cannot understand it. A friend once asked me what that was really like, he really wanted to know. I said: "You know when you were at a party, it's late, you've just come home and all you want to do is get to bed? Sometimes that's how I feel when I wake up, and then I still have to get through the whole day." I could tell it registered with him. But even that was temporary. People just can't experience what you experience. My advice is to only talk to people about it if they ask, or at moments when you really want to tell them. When people specifically ask me how it is, I say in an airy tone: "It's a challenge." If they want to know more, they can ask, but they usually don't. And why would they? Everyone is living their own life. And please, just ignore the unsolicited advice, just shrug it off. It very probably comes from a place of love, as misguided as it is. Looking back, I can say that it has been a challenge, but my illness has also forced me to choose what I do and what I don't or even won't do. It's kind of a permission slip to always ask: 'does this spark joy for me?', or 'is this realistic for me?' Also, I used to be very serious about life, relationships etc, and it seems to me that you are too. I'd say: lighten up. People go on with their lives whatever you do, and some (perhaps many) will disappear. A disability means change, and people either change with you or they don't. The ones that remain are your true friends. I am glad that (like me) you have a great husband. It is something he has to come to terms with too - both your lives have changed a lot. The last thing I want to say is something that you probably cannot understand, but in a few years' time you may. And that is that I am happier now than I used to be. I have a different outlook on life, and it is a better one for me. As tired as I often am, I enjoy life more. Can't explain it, but it is true. I hope this may come true for you too. But whatever happens, this is a radical life changer that you have to deal with on a daily basis. I am so sorry for that. I am wishing you the best, and am sending you love and light!
Elin, yes and amen, and thank you. Thank you for sharing your story on UA-cam. I have multiple Autoimmune diseases and conditions that are invisible. I am 55 years old. I was diagnosed with Type 1 Diabetes as an 11 month old. I grew up with so many "Diabetes Police" telling me (and my parents) what to do / not to do. I am so grateful that my parents taught me how to deal with people's uninvited comments and how to keep a positive attitude through it all. I teared up several times as I listened to your video, but also laughed at other times, and shook my head in agreement throughout. Thank you for being real and sharing your experiences on here. Invisible diseases are tough, but it does help knowing that we are not alone in this journey through life.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I have lost friends due to my autism challenges and I've lost a job due to a lot of fatigue. I've been struggling with not having much energy for a few years. This video made me feel a lot less alone.
This came at a perfect time for me today. I have Multiple Sclerosis as well. Today was hard!! Thank you for your honesty. The future can be scary for me. I have a special needs kid and not sure what I will be able to do etc. Hearing what we all think is encouraging that others are out there living this life too
I'm not dealing with a chronic illness, but the struggles you have described relating to others or they relating to you, definitely mimic living life with grief. Grief is invisible as well and like living day to day with chronic illness, most people can't understand if they haven't experienced it. I think initially we try to make it easier on others but after awhile that just gets very exhausting. In the end, after 6 years, I've learned that when we are carrying the weight of chronic life challenge on our shoulders, we have to learn to put ourself first, feel the feelings that come with it and share those feelings when we need to. The people who can support us will stick and the ones who can't will fade away. And it's ALL okay. Kudos to your Andy. He sounds amazing and you are definitely blessed to have him by your side. I miss and grieve "my Andy" every single day. I see all of the chronic sufferers surrounded by healing white light.
Thank tou for this video. I can relate to everything you touched on. It can be very isolating having invisible illnesses. Ive befome very anti people because I feel its so misunderstood. Sending you much love and strength ❤
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
20 years dealing with everything you hit upon. I just isolate myself now. I know that's not good but it's the only way i can cope. Friends and family have NO idea how hard living like this is. Great video. Good luck.
Thanks a lot i really needed that. It was like me talking back to me from the other side of the mirror. But for some reason i coudnt talk it loud to me. Being a brain cancer patient for last five year's . I have gone through multitude of treatments, like surgery, Radiotherapy, chemotherapy , physiotherapy. Just recently, a severe seizure struck me that landed me in a ventilator for a week. I was to tried to think and figure thongs out. Your video was needed. Thanks. More strength to you for your logey struggles.
The part about being left behind hit so hard. These were the words I was looking for in understanding of "why I can't just look at the brigher side of things or focus on what I can affect". It's cause the version of myself I envisioned doesn't have these limitations I have. Thank you for sharing , it was personal and insightful
I get you. It makes me waste memories , the fatigue. I am bedbound and cannot w 5:59 alk, have seizures, I have fnd and RA, I lose my speech often. You need talk therapy with a psychologist who specialises in chronic illness it is no good locking feelings inside.
The thing that annoys me with having an invisible illness is that people in general, who don`t understand these kind of illnesses, don't understand that our struggles are not just about pain as they understand it, but so many other things like fatigue, muscle spasms, etc...
Thank you for sharing this. 💗 I’m in the midst of my diagnosis process right now-so far the words fibromyalgia and lupus are being thrown around. Something’s definitely not right and I’ve been healthy all of my life up until now. Videos like this are helpful.
You are awesome! This informative video is giving me the idea to write out my thoughts about my own health because it seems like we are living in an age where we have to find our own space with self care. Now I know it's okay to do that more than I was previously aware. Thank you Elin! Stay strong dear lady, you got this!
Thank you for this video - I've was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) around 9 months ago and I've been struggling a lot with everything you mentioned. All the points you raised regarding isolation and feeling worried about talking too much about it but also feeling that no one really understands. I've struggled with feeling like my friends don't know how bad it really is or just feel like I am overreacting. The only person who I feel like really understands me is my mum who also suffers from an invisible chronic illness. It's so difficult to feel validated when no one understands how bad it is - but you're right that self-validation is so important so I have found that journaling or even just recording myself talking about how I am feeling can be helpful sometimes. I am unbelievably sorry that you are living with an invisible chronic illness as well, but it is very comforting to hear you talk about everything because it has made me (and I'm sure many others) feel less alone, so thank you
invisible illness here, something like the "usher syndrome" since the age of 29 (simplified) my seeing (6 permanent /temporary different problems, with the seeing though every day) is getting worse, it is possible that im partly blind at the age of 50+ and no doctor can help me to this point, even thou ive been at countless docs and eye clics + therapies where ive paid extra money and 1 big tinnitus + 1 small, wich als results in a hearing loss every few weeks at random, but something like that is "more normal" on people it all came from one day to another, by mere random, no normal illness, hit or something occured, just "because" my genes where bored i suppose have a good one and much power for the future.. i would (like everybody) do anything to get my normal boring health back...life was easy ^^#
Thank you for this. I am on the path toward healing, but there is so much about chronic illness that is so painful. Only people who experience it can truly relate to how you feel. And, because of that, it can feel so isolating and lonely, on top of all the physical symptoms. Knowing that there are other people out there feeling the same way is healing.
I'm currently having skin flare ups as I deal with a chronic skin disorder. There are many things that are hard for me to process, like the one nobody knows the exact cause, that there is no cure, that there are different treatments, which might be useless or even harmful. The perspective is different, physically I feel totally healthy but on the surface it's visible smith is wrong with my body. Emotionally and mentally it's devastating, this condition means social isolation for many of us, meaning love, friends, family.. all those life parts are hugely negatively affected. One learns to live in a shell and hide as much as possible. The mentioned thing about not being able to go for the dreams is very relatable, as I often give up on any art project during flare ups. I also started being more open when being asked how I am. I will definitely try to sleep longer and try to bare with it.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤…
I have an invisible illness and exhaustion is one of the symptoms. I find it really embarrassing if I’m on public transport and I need to sit down but because I ‘look fit and healthy’ I find it hard to ask or when someone elderly needs a seat if I can’t stand for them (and I do if I’m not having a flare up) then people look at me like I’m the devil. Sometimes I fake a limp or something as I get off the bus and I see people thinking ‘oh, ok she is disabled’. I shouldn’t have to do that but the judgement if I don’t is worse.
I've got an invisible illness too. You asked for advice on how to respond when people ask how you're doing. I have learned to cater my response to whoever is asking. 100% open with doctors and the people I'm closest with. With other people, unless I actively need help in the moment or am struggling to walk, it's usually something of "I'm taking it day by day, I'm doing ok, or I'm hanging in there". Also if it's not someone you're really close with or someone who just doesn't get it, it's a shorter response. If the fatigue/other symptoms are horrible that day, it's I'm fine. No need to use more energy on people who will never understand. You also mentioned feeling like you don't show up enough for friends and family. Something I read recently is that the moon shows up every night, but it's not always full. And the ocean is always there, but sometimes the tide is low or high. So show up when you can and how you can. The people that actually matter will adjust to the new normal and accept you for who you are.
Such wisdom and so helpful. You’ve given words to how I feel I need to handle my husband’s terminal cancer. Thank you Sarah.
I love the imagery of the moon and ocean... so beautiful and helpful ❤
Thank you for this…I deal with chronic pain and a chronic condition as well
@@boiseclarks my thoughts are with you and your husband 🌷
@LeanneClark sending thoughts and prayers for all the graces you need.
I have an invisible illness - Fibromyalgia and every day is different. Having a flare up at the moment and on the outside I look “fine”. It sucks. People need to be kind to others regardless and hopefully the world will be better for invisible illness sufferers and all. Sending love and strength ❤
All of us with invisible illness tend to "mask" our feelings, pain and fatigue. Its unfortunate, but it seems to be something we need to do to survive society. Fatigue can be so debilitating, it can be hard to judge your own energy levels. No matter what you are living with it is different for everyone - people don't seem to get it. You should never feel guilty, we have to change to deal with our struggle, its them that either don't or don't want to understand. I had to lower my expectations in a number of areas of my life, I was told to sop working by specialist to cope with the basics of life. (by the way, I do not have MS). Just do the best you can with what you have now.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Yes! One of the worst symptoms for me with my auto-immune is the fatigue! And how quickly it come on. One minute or one day you’re fine, and the next you’re so tired it’s hard work just lifting your arm! And then people tell you “it’s this time of the year” or “yes, but everyone is tired after the stress of covid”. Nobody seems to understand.
I totally feel this also. People tell me "it's that time of the year" but how would they know?. I'm in pain more than most people around me. I also have auto immune disease. I feel sad and other people are living life around me.😢😪
I have many mental health problems, on top of physical illnesses; but worst is never ever being able to wake up feeling rested. My mornings are sooooooo difficult. I feel physically worse than when I went to bed, so my mental state is awful as well. Once that is over - can take up to 3 hours for the darkness to disappear, the body to adjust to being awake etc., I then face the reality of all the losses in my life. Jobs, income, travel opportunities, relationships, friendships, hobbies etc. but then I go out and I'm surrounded by stray cats here in Istanbul, and I am the happiest human on the planet. It is pure joy being with them, taking care of them, giving them love. And LOVE is everything. Be kind to yourself and love as much as you can. 🥰
I also have a neurodegenerative disease. You're so right about how healthy people don't understand fatigue. I got through to a few people in my life by looking them dead in the eyes and describing it like this: It is fatigue that is so heavy, I feel literally paralyzed. Literally. My husband would pick me up off of the floor and put me in bed. I was unable to correct the position of my body or wipe the hair out of my face. I was so tired that the effort to move my eyes in my skull felt demanding. Breathing feels exhausting. --And the brain fog was so severe that I couldn't read or write for months. I forgot how to tie my shoes, got lost in my own house, and didn't know what my dog was or why he was in my house. I'm doing infinitely better now thanks to Cleveland Clinic!!
I'm also paralyzed with fatigue,x
So glad to hear this… 🙏
Grief is a really large part of chronic illness. Grieving who you once were, what you once could do and or what things you’ll never experience or have because of the illness/ess. At least it has been for me. I really appreciate everyone and any one sharing their experiences. I wish we could all just be well together, not needing to bond over such a topic. And yet it is a comfort to find people in similar situations, since that is often not the case in ones real life. Being understood is so important, thank you for sharing Elin ❤
I hear every word you say!! You hit the issue perfectly!!After pushing myself to work through the horrific pain, fatigue and dizziness, I finally had to apply for disability as I could no longer work even an hour most days. It’s so unpredictable. Some days, I can walk a mile or two. Sometimes, I don’t have enough energy to eat, drink or get to the bathroom. You’re right about who to tell. My family, which have been great, don’t even understand. Only my husband and kids see the “real” me. I finally collapsed and ended up in the hospital whenever I tried to work. I’m now on disability, which is very embarrassing to me. I, like you, look perfectly healthy most of the time. I also try to be impeccably groomed so as not to make people feel uncomfortable, but when I go to the doctor, I now never wear makeup and leave my hair uncombed just so they see what is going on. Their attitudes change based on how I look! Hang in there-you’ve made me feel less alone.
I think your feedback is true for all suffers of chronic illness. People really don’t get the struggle unless you are having an issue in the moment. They stop wanting to ask you how are you doing because they are afraid of the response. I too have started to tailor my response to my audience due to this fact. You definitely feel less genuine but I feel like I scare people due to the fact that my condition appears on the surface to be no problem.. to them.. because yes I’m able to work and appear to have energy but when I go home I can’t do the thing I use to I’m exhausted.. this video validates how isolated people with chronic illnesses feel.. I like how you stated we feel left out or falling behind …. This is so true… with my condition I’m not able to eat solid food and this has been a big issue for me. Some social settings revolve around sharing food and I not only miss this but feel I’m missing out on the people connections involved with eating a meal. I have tried to eat and talk during a meal and people tell me they feel awkward due to me not eating so I usually step away or do not socialize at all. Thank you I found your video very helpful.. I saw it at the right time.. I needed it 😊
Fatigue affects everything! Living, breathing, cleaning, eating, thinking, talking, every aspect of life.
Thank you for this wonderful video!! I have been living with ME/CFS for the past seven years and you took the thoughts right out of my head!! (You definitely didn’t take the words right out of my mouth, as there’s no way I could be as articulate as you!!) I wish you all the peace, happiness, love, strength, and health in the world! 😘
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing this. I also have an invisible illness called Idiopathic Intracranial Hypertension & can really relate to everything you said. The symptoms, the hospital bills, the dismissive doctors, the meds, not being able to work or keep a job for more than a year….. I got diagnosed 2018, had brain surgery last year & live day by day. Really needed this today.
so relate to the isolation and feeling invisible. I'll see a mate and they're like "what have you been up to lately?" even though they know I have cfs, it's not that I feel bitter for them for not knowing that I spend all day doing literally nothing ! but it's more just feeling completely misunderstood. like people know I'm sick but they cant actually comprehend what that actually looks like day to day. so relate to feeling like you can't really met people where you're actually at and feeling like it lacks that transparency but then not wanting to show too much. bless you for sharing this. 🙏
You are not doing literally nothing you are doing everything in your power to survive.
Thank you, thank you for this video. After over a decade of specialists, symptoms, and frustration, I was finally diagnosed with Lupus last December. Everything you talked about resonated so much with me. You conveyed ALL of the things that I am currently feeling so much better than I ever could. I will be sharing this video with my family, friends, as well as the community of women I work with through social media. We are all the mothers and caregivers of adult children with autism and comorbid disabilities. Every single one of us now lives with a chronic illness. I don't view this video as negative in any way. It is a reality too many of us live with and is validating and very helpful. I hope you consider making this topic into a series. I actually started pursuing minimalism a few years ago to help manage my anxiety, conserve my energy, as an act of self care, and in preparation for what the future may bring.
Hey there, greetings from Poland. I'm leaving this comment here just to let you know that this video has made me grateful for all the energy and health that I have to take care of my home on daily basis. Your talk has made me more appreciative. Instead of complaining about my chores, now I'm thankful that I can actually perform them without any health problems. Thank you and I'm sending you lost of positive, uplifting and healing energy 💙
No for me it is not sending negative energy, it is teaching us about health, about opening up, trust us as youtube community and if anyone is sending any sort of negativity then delete those messages. We are all here for you and for each other ❤
Well said! 👏🏻
🙏💕
🙌 yes
I really appreciate you doing this video and sharing your story. You’re not complaining. You’re living with an illness and it’s important to share, it’s important for all of us to share our experiences so that we can learn from one another and lift one another up. Everyone is different. Everyone’s health journey is different and the only thing that we can do is to do our very best, listen to our doctor and listen to our body. I just want to send you love and light and to everyone else who is living with a chronic illness, I love you ❤️
My chronic condition is very different from yours, but it does result in periods of time when I'm in constant pain. I also struggle with being authentic about that, using a cane in public, allowing people to lift/carry things for me, etc. It's hard to know that some of my favorite activities will always be off limits; I'll never run again, for example. Then there's the whole issue of pain medication, which ones work for me, avoiding addiction, etc. Anyway, thank you so much for making this video and opening up the conversation. Wishing you a "good MS" day. ❤
I get it. I've lived with MS for 38 years so far. It has helped so much to be part of a support group - we still connect even though we live on opposite coasts. So helpful to talk with others who understand.
Thank you for this video. You articulated this perfectly. I’m three years into my chronic illness, pain, imbalance, vision losses and fatigue. Really feeling like I lost so much interest and vitality.In my life. Struggling to get back into living but the constant revolving isolation, anger, and pity are hard to get past.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I was born with a brain tumor. It has caused strabismus. It has caused surgeries of being crossed eyed 3 times. Still my eyes to still not be straight. Challenges with Crohn’s disease. I just had another brain tumor. I am recovering from surgery as I write this. I have never had been crying about my illnesses. I just go with the flow. I guess something that has helped was a beautiful loving mom. She knew how much I struggled in life. Now my strength comes from the God. God Bless You and , stay strong. We all go through challenges. It sucks. 😊
As the parent of a child with complex, mostly invisible medical diagnoses, this video is very validating. I can relate to so much of what you shared. Thank you for making this video!
I cried while watching this. You put into words all the struggles I, and many others have. I suffer from CPTSD and have been diagnosed as 'high functioning ', which basically means I'm a fricken good actress at playing the "I'm fine" persona. I tried being honest with a friend about my struggles and why I had to cancel our get together, it was a disaster. Pushed me right back into the I'm fine person. It is so so hard to be honest, for all the reasons you pointed out, so I am truly grateful for you having the courage to make and share this video. Thank you so much.💚
Thank you for this comment. I'm currently going through losing a friend because of years of invalidating me and my symptoms. That feeling of trying to be honest with friends about why I need to go home, or cancel, etc. I remind myself true friends would not care or judge, but after years of trying to be honest and getting met with anger or annoyance, it's hard not to not let it hurt. Thank you for your comment and your courage as well.
@officersonic3014 Thank you. Much love to you, just know you are making the right decision for you. It hurts, but it gets better and you will feel freer and less burdened. It's hard trying to be what someone else wants, exhausting in fact. You take care of you. 💕
Thank you for making this episode. I have a few rare diseases that are invisible illnesses, while I don't have MS I identify with so much of my this. Its honestly nice to hear the struggles so I know I'm not alone and I'm not the only one having these thoughts. I've been disabled for 3 years and the grief and adjustment are real. So is the struggle with getting through applying with disability and seeing doctors, paying for meds and everything else.
Much love to you friend. Thanks for sharing your light. 💕
You are beautiful and so well spoken. Thank you for being vulnerable and sharing your truth. I do not have a chronic illness but I’ve been following you for a “Slice of Light” in my life, and my heart hurts for you since I learned about your diagnosis. Hugs to you and Andy! I’m so glad you have each other! 🫶🏻
Thank you for this video. I was shaking my head yes through the whole thing. I have MS and it’s hard to let people really know how you feel. I know they look at me (not all people) and think nothing is wrong with me. Praying for you. ❤
I don’t think I have MS but I have struggled with autoimmune disease starting with Reynauds in my 20s and developing more and more over the years. I have just been diagnosed with another one, Sjogrens, lately as all my teeth have broken off like icebergs. I totally understand what you are saying. I am alone. If I have to go somewhere like a doctor, I try to make myself presentable and good and automatically others think there’s nothing wrong with me. I have a team of doctors and specialists and I get all that unsolicited advice to. It makes it so hard when people do this. It is such a struggle with the ‘invisible disease’. I’m sorry about your diagnosis. I know how hard it is. At first that’s what they thought I had. Most of the time it takes so long while they ‘rule out’ other things. I am not the person I used to be because of this. I worked for 30 years as an Advanced Practice RN before this happened to me. It was 2008 when docs finally said ‘no more’. Of course, that’s when the market crashed so I also lost the 30 years of savings for retirement I had worked hard for. Symptoms affect functioning and you lose friends because you can’t always participate. There is much more research needed in this area. Glad you made the realistic video.
I live with MS, too, and this whole post is speaking MY truth! Thank you so much for your honesty when some of us need it the most!❤
Hi Elin. Thanks for sharing. I am in week 4 of a neuroplasticity program called DNRS that is helping me overcome chronic health problems (not MS). From day 1 I saw a difference in my symptoms, and I previously was the world's biggest skeptic! I would be doing you a disservice not to tell you about this miracle therapy. Even if I had MS, I would dothis program. There is nothing to lose.
Thank you so much for opening up to the invisible sides of chronic illnesses. Makes me feel less alone. Pain and fatigue are very real and invasive. I too struggle with when to say what about my illness and symptoms. I tend to ask too much of myself, but paying the price later. Also I sometimes feel quilty for being a wife and mother with disabilities. It affects not only me but everyone around me. That's hard. Specially for my husband, although he doesn't want to hear me say that I sometimes feel like a burden. Also, every day is different and you keep adjusting to how it is going. On a more positive note, I am very thankful for the love and help around me. Sleeping 8 hours at least, trying to find a balance between resting and activities, learning to say no to things and people have helped me. Not perfect at it myself all the time, but I am trying. Sending you lots of love and light. Thanks again for your videos, you are in my thoughts and prayers. ❤️
I’m listening to you describe EXACTLY how I feel and the symptoms I experience too. The fatigue, the always dizzy to varying degrees. The fluctuating vision issues and symptoms throughout my body like numbness and tingling. Yep I totally get it and I feel very similar. You have described what I endure daily better than anyone I’ve listened to. I feel anxious about it too and mainly push that away and just go about my life best I can. Thank you and take care! 🌻
You take care too! Thanks for sharing 🌼
This resonated with me SO much. I have isolated myself over the years from friends because it eventually gets exhausted hiding how I feel 😢 (I have chronic pain from severe scoliosis and epilepsy). Whenever I have flares I too feel so so guilty or a failure for not being able to do as much as I used to or do things I want for people but physically can’t! Im trying to have more compassion for myself and not beat myself up 💖 Thank you for this video
OMG! You said it exactly! I have Fibromyalgia and I’m Type 1 diabetic. People give so much unsolicited advice. I’ve had this for 26 years and I am so tired of hearing people that I have went into myself and I am not the person that I used to be. I wish people would understand that we have tried everything. I’m also happy that you know a friend that works every day, blah,blah,blah… I worked for about 12 years until I just couldn’t anymore. I’m just tired of hearing the crap from everyone about me, so I say nothing. I’m fine…and just leave it there. Bless You!
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Im in constant daily pain from chronic illnesses. And i haven't found anything that helps me sleep. It would feel so much better if i could just sleeeep. Ive tried it all.
Anyway, this video helped me.
Thanks so much for this video. I also live with multiple invisible chronic illnesses. I almost cried at times as i recognised what I live everyday in what you are describing. It was an amazing video thank you again
Having an invisible disability and being undiagnosed sucks so much
My husband suffers with chronic pain. Some days are better than others. People don’t always understand
. It took me a long time to admit/explain this to my closest friends. I felt better once they knew. Sometimes we can’t accept an invitation because we don’t know how he’ll feel. It’s been a relief to know people understand
Me to does he have fybromyalgia heds
I’m a creator with a chronic illness and only just told people about it …..I just couldn’t take it anymore. I kept trying to heal it, get back to who I was and it took me so much to accept that I’ll never dance again.
Oh sweet Elin- I am so sorry you are are having to go through this horrific disease. I will be praying 🙏 for complete healing.
I’ve had fibromyalgia and psoriatic arthritis for 37 years. I doubt many people have the type of fatigue that feels like your last drop of blood is draining out of you. I don’t feel that this video is at all negative. You are stating reality and I appreciate that. There’s so much toxic positivity from able bodied people who seem to expect people with a chronic illness to function at the levels they do.
I felt your words so much: "like your last drop of blood is draining out of you." I have Hashimoto's Thyroiditis and Non-radiographic Spondyloarthritis (positive HLA B27), and my chest has been hurting the past few weeks from constantly pushing through all the stress and pain in my body.
I’m so sorry. People don’t get how life altering any chronic condition is. I wish you all the best.
My husband had a stroke 3 1/2 years ago. I am his caregiver 24/7. His illness is both mental and very physical. People are always very kind to us when we go, but it's tough always being the conspicuous people. Thank you for providing a platform where we can talk about struggles and hard-core realities. Please, use your channel and your audience as an outlet as much as you need to or want to. It's about being a real community of real people.
I struggle with chronic gut issues (small intestinal bacterial overgrowth, gastroeshopageal reflux disease, and IBS) - some of those are supposed to be treatable, but the treatments don’t work for me. It really impacts my life, I can’t eat many foods, I often have stomach and joint pain, fatigue, I get an upset stomach easily. It really restricts my life. Thank you for making this video. Everything really resonated with me - especially just struggling with the physical symptoms, the sense of isolation and loss from what my life could have been without those issues
I really appreciate the honesty, I believe that truth and honesty are important, talking about frustration, sadness and just expressing painful feelings is healing. Thank you for sharing ❤
As someone who struggles with a couple of chronic issues that have completely changed my life, I really appreciate your message. Life gets tough and we struggle. Years after being diagnosed, I still can't seem to completely accept it. I believe there is wisdom in me and that one day I will be more at peace with it. Many warm wishes from another ex-academic :). Thank you for sharing.
Thank you for your vulnerability. I'm a recovered Lyme warrior. I've experienced everything you mentioned here. People need to know they are not alone and you just beautifully outlined it all.
This was a brave thing for you to put out and I didn't find it negative at all but uplifting. I was 52 when I was diagnosed with Multiple Myeloma, a blood cancer. Honestly, I was shocked because I had always been so health conscious. I have been in and out of treatment for 17 years and currently am facing another relapse. I try to stay positive but there are times when I just get depressed and I just sit with it. My family has been a great support especially when I went thru a SCT( stem cell transplant). The fatigue is/was a real thing and I'd say be kind to yourself and do what you need to do even if it means disappointing someone else. Take care and thanks for this video.
My mom has had MS ever since I was a kid. It is so eye-opening for someone like me watching this, this really helps me understand her better. Thank you for sharing this! One thing I might add is that for her, it was accompanied by clinical depression, and that caused her to be even more stressed which in turn caused her MS to get worse over the years. Fortunately, eventually, we were able to diagnose that and take the depression and consequently, the MS under control and sort of stabilize her condition.
I can relate with you. I have RA, it's been two years, I look fine and people assume I am okay, sometimes it's hard to socialize and I cancel a lot of plans. They think I am making excuses, they don't understand often what I am going through.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I don't have MS (I think... I was assessed for it so many tears ago, and haven't really gone to a doctor in many years), but my symptoms are basically the same as yours. I could have written what you said, myself. Today is a hard day, and it meant a lot to hear another human who intimately understands what this feels like.
Something that helped me with talking to others about health is have your people you talk to and who you’re authentic with so that way when someone asks who you wouldn’t really go into detail with, know, you already have your people and to have grace for yourself. You don’t need to share and give 100% of an answer to every single person. That will wear you out. Be authentic to the people who are going to hear you and give back to you in a way that lets you know you’re heard.
Great idea! I'll share it with my husband
Only a handful of people at work know about mine and sometimes I feel like I’m living a lie. I don’t want to necessarily hide it but there’s no good way to state it to them. Also I’ve gotten the “my old coworker had ms and she went down hill so fast.” Um they don’t mean it that way but it can be so hurtful. I’m also worried it’ll create more fuel to the antivaccers. Also depending of what dmt you’re on, you can sign up for a co pay assistance program, which has been amazing.
This video made me feel way less isolated in this illness. I feel like this video explains all the things I have a hard time telling family and friends. Thank you ❤
The hiding and inauthentic part is very hard and like masking- tiring-…. Very very hard - imagine if you were having a stroke or dizziness and nausea or severe panic attack and so much worse- Otis just very very hard to be normal or even “present.” It takes a LOT of your living experience and actually diverts it to isolation and self.
You expressed this so well. I have many chronic illnesses and experience some of the same symptoms as you. People don’t get it, and I often feel like I’m complaining or people don’t really care. I completely understand not knowing how to do with it all and adjusting.
Wow, I really needed this today, June 13, 2024! This was amazingly helpful to me! Your words resonated with me, immediately. I'm a walking timebomb, with chronic heart failure. Doctor's don't give me much hope. However, I am still here. I explore alternative methods of healing that have me feeling better than doctors said I would.
I do feel invisible and feel like I can't be honest with people about what is going on. You have encouraged me greatly ❤
This is so helpful. I kept thinking about how we don’t really know what anyone is dealing with at any given time and hearing your story helps me to remember to simply be kind and patient and helpful to everyone I come across. Thanks for being so transparent. Appreciate you!
Appreciate your honesty. Just know you are in my prayers. I relate to many of your struggles. My faith in Jesus is my strength. Thank you for making this video.
You are amazing and probably don't realize the very deep comforting and supporting impact you have on so many. Thank you!
The feeling that resonates with me the most is grief, of losing who you once were. This feeling of grief is the same as losing someone, except you are reminded of it every day, and it may even get worse with time if you health continues to decline, reaching lower and lower levels, as what little you have left is slowly stripped away. Despite this, understand that you mean something to someone. Continuing to go on may feel impossible, and although it's undoubtedly a sacrifice, it's one worth making, because if you can lift up just one person, then your life has a meaningful purpose.
Thank you so much for sharing. I’m sure it was tough to do so. I’m glad your husband is so incredibly supportive. That is priceless. Sending you all the love and strength. ❤️❤️🤗
I also have an invisible illness in which some of my most problematic symptoms are fatigue, and brain fog. I'm 35 now and have struggled with it my whole adult life, and as a result have not been able to work full-time for longer than 6 months at a time. The hardest part is not having money to enjoy life because I can't work. My illness is considered a disability in some countries, but not where I live. I have applied for disability once and been denied. I might try again, but for now this means me and my boyfriend live in a crappy rental home with 3 other people (so 5 altogether). It sucks... I had dreams. I wanted a career, a house, to enjoy my hobbies. Currently there are no effective treatments for my illness (PMDD), and I'm so exhausted from trying all the things over and over again hoping something will help enough to help me live a "normal" life. I don't know ... I'm having a really hard time. I'm currently looking for work again, but I don't honestly know if I can do it.
I have an invisible illness and this video resonates with me so much. Even though I have a totally different condition, it affects my every waking moment in some way or another. One of the hardest parts for me is accepting that I have this after being not long ago a fit and active person, and accepting that there is nothing medically currently that can be done about it that hasn't been done, and unless some new treatment comes out there will continue to be nothing, and so accepting that and that the symptoms I get will most likely stay the same indefinitely.
Thank you. I struggle with guilt constantly. I was a competitive gymnast who rode dirt bikes & kept up "with the guys". But now everyone assumes I'm making up symptoms or I couldn't possibly be in as much pain as I say I am or have been. The frustration builds up and causes more physical symptoms. Still working on breaking that cycle.
My spouse is chronically ill and dying. Looking at the NOVA film on Dying is not easy to watch. But truthful. One ting the video was informative and thought provoking. What may help you feel better of the word Disability is condition which i is disabling. It is a inconvince .
this is an extremely good video....there is not a single bit of negativity. it is full of genuine personal experiences which you share with us and we fully appreciate it ....
Thank you, you voiced so much of how I feel and after twenty years of pain from FM, CF, depression plus other invisible illnesses I still am struggling. You have a lovely voice and manor, it was very comforting to hear your thoughts. I wish you well with your illnesses, I look forward to hearing more from you. Many thanks.❤❤
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤…
It's refreshing to hear someone being honest about their struggles and symptoms. Big difference between negativity and being open about what the reality is. I didn't catch any negativity from this, you are handling your chronic illness very well.
Thank you for making the video, incredibly encouraging! I have Ataxia, which very similar to what Mutiple Sclerosis is. It is scary and like you said lonely unfortunately. It's refreshing to see someone authentically talk about these difficult issues.
Thank you for sharing. So much of what you said could be coming out of my own mouth.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing this! You never know who is watching that desperately needs to hear this🫶🏻
There definitely does need to be space for negative feelings and discussions about disability. As a disabled person, i only saw people posting the positives and it made me feel like i was doing something wrong in my life because i couldn't go out and do stuff like all these disabled content creators.
But when you find someone actually being honest, it helps you understand that, a lot of people are going through the same thing as you, you aren't doing anything wrong, you're just doing what you CAN.
I want to validate you and how you feel. All very normal and you are not alone! I started having similar symptoms when I was young and I'm 61 now. I went through all the tests for ms and they couldn't come to a conclusive diagnosis. They said I probably had something that they just didn't know much about yet and couldn't test for. I have spent my life with all kinds of random symptoms, some similar to yours. Fatigue being a running thread the whole time. It's been so unbearable at times. A component of my personal struggle is that my husband forgets when I look ok or don't say anything! I believe he is on the spectrum. I haven't been as lucky as you to have friends that understand or even want to know more and I am exhausted at trying to get them to have a better understanding. So count yourself lucky in that department. I cried at the end of your vlog about your future not being what you had imagined. That happened to me. Please share anytime, I imagine that helps and I will always support you. I hope more help comes for people with diseases like ms. I hope your future is good and bright. I will think of you when I pray today🙏
Thanks for sharing. I'm 58 and previously doctors just said things like, it sounds like you've been very busy, or it sounds like you're depressed. But about 2 years ago, I found a family practice where the PAs and the NP really listened and did further testing. But now it's like I'm finally even able to say to myself, no it's not in your head, I have 2 autoimmune disorders, in addition to the allergy problems. Sometimes I wish I would just be healed; I guess I'm still grieving. And looking for what possibilities are still there.
🌹 well done sweet thing...I am 71 and 24yrs in with PPMS and totally appreciate your own personal journey and how well you presented your thoughts..Ģod bless you ❤
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Elin, thank you sooo very much for being so vulnerable you nailed how I feel. I am ill and I live alone and have no family or friends do to my condition. I just needed this today. I am sorry that you have this awful illness. Sending prayers.
Thank you for sharing your story. I have been dealing with an undiagnosed condition for a few years now and it gets worse whenever it wants to. I'm terrified of how bad it can get in the future. Trying to live one day at a time....
You are not alone! Since the birth of my daughter twenty years ago I have suffered from heavy depression and anxiety … another invisible illness. A couple of years ago I decided to live a life without permanent medication (an option you don‘t have). What helps me in the dark moments that can last for days or weeks is a breathing technique from Yoga and autogenic training to calm down. I also hold on to the thought that better moments will come ( sort of a Mantra). And I allow sadness and anger about this illness to be a part of my life. In good moments I can enjoy life so much more … it‘s precious! All the best for you from Germany!
You have articulated so beautifully the intricacies of living with chronic illness. Thank you so much! God bless 🙏🏼
Two things helped me when I was very ill.:
One was wearing a necklace of a certain color depending on how I was feeling. I had 5 different beads I would choose from... from white (almost no pain/symptoms) to black (incredible pain and horrible symptoms). That way I could let people know how I was feeling that day without always feeling like I was "whining" or "complaining" about what was going on. (And talking about our illnesses is NEVER whining or complaining. We are communicating.)
The other was blogging. I understand that not everyone has that ability because of pain or other symptoms of their issues, but a Vlog or a Blog about the illness/disability/life experience can be an amazing catharsis as well as a connection to others.
I am so proud of you for speaking up and out about MS. It's in my family and I understand the vagaries of the disease from a different vantage point. But your experience is yours. Embrace this season in your life when you can... yell at it when you can't... and share when and where you are able. You are being heard.
You are sooo wonderful to do this for those of us who are suffering the same. I’m in tears knowing I’m not alone in dealing with people’s reactions-especially family.
God thank you so much for this honest video. I needed someone else to say out loud everything that I've been feeling with my chronic pain these paast 4 years. Thank you ❤ I hope you start feeling better and better every day.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
Thank you for sharing, I am so sorry to hear about your illness. I was diagnosed with an invisible illness 7 years ago. I am older than you, in a different phase of life, so I recognise that my situation is different, But still I recognise everything you said. I have stopped working, and am now doing a PhD in art history in my own time. (I heard your story and I think you were very wise to choose you over an unwanted career path.) I need to work towards something, and this I can do - as long as it is in my own time - and it gives me joy. I have good days and bad days, good weeks and bad weeks.
The fatigue is the most disabling for me. And honestly, people just cannot understand it. A friend once asked me what that was really like, he really wanted to know. I said: "You know when you were at a party, it's late, you've just come home and all you want to do is get to bed? Sometimes that's how I feel when I wake up, and then I still have to get through the whole day." I could tell it registered with him. But even that was temporary. People just can't experience what you experience. My advice is to only talk to people about it if they ask, or at moments when you really want to tell them. When people specifically ask me how it is, I say in an airy tone: "It's a challenge." If they want to know more, they can ask, but they usually don't. And why would they? Everyone is living their own life. And please, just ignore the unsolicited advice, just shrug it off. It very probably comes from a place of love, as misguided as it is.
Looking back, I can say that it has been a challenge, but my illness has also forced me to choose what I do and what I don't or even won't do. It's kind of a permission slip to always ask: 'does this spark joy for me?', or 'is this realistic for me?' Also, I used to be very serious about life, relationships etc, and it seems to me that you are too. I'd say: lighten up. People go on with their lives whatever you do, and some (perhaps many) will disappear. A disability means change, and people either change with you or they don't. The ones that remain are your true friends. I am glad that (like me) you have a great husband. It is something he has to come to terms with too - both your lives have changed a lot.
The last thing I want to say is something that you probably cannot understand, but in a few years' time you may. And that is that I am happier now than I used to be. I have a different outlook on life, and it is a better one for me. As tired as I often am, I enjoy life more. Can't explain it, but it is true. I hope this may come true for you too. But whatever happens, this is a radical life changer that you have to deal with on a daily basis. I am so sorry for that.
I am wishing you the best, and am sending you love and light!
Elin, yes and amen, and thank you. Thank you for sharing your story on UA-cam. I have multiple Autoimmune diseases and conditions that are invisible. I am 55 years old. I was diagnosed with Type 1 Diabetes as an 11 month old. I grew up with so many "Diabetes Police" telling me (and my parents) what to do / not to do. I am so grateful that my parents taught me how to deal with people's uninvited comments and how to keep a positive attitude through it all.
I teared up several times as I listened to your video, but also laughed at other times, and shook my head in agreement throughout.
Thank you for being real and sharing your experiences on here. Invisible diseases are tough, but it does help knowing that we are not alone in this journey through life.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
I am saying this sister, don't worry one day you will be cured from this completely.
I have lost friends due to my autism challenges and I've lost a job due to a lot of fatigue. I've been struggling with not having much energy for a few years. This video made me feel a lot less alone.
I have Cushing's and I have these exact same feelings. I wouldn't wish it on anyone.... ever.
This came at a perfect time for me today. I have Multiple Sclerosis as well. Today was hard!! Thank you for your honesty. The future can be scary for me. I have a special needs kid and not sure what I will be able to do etc. Hearing what we all think is encouraging that others are out there living this life too
I'm not dealing with a chronic illness, but the struggles you have described relating to others or they relating to you, definitely mimic living life with grief. Grief is invisible as well and like living day to day with chronic illness, most people can't understand if they haven't experienced it. I think initially we try to make it easier on others but after awhile that just gets very exhausting. In the end, after 6 years, I've learned that when we are carrying the weight of chronic life challenge on our shoulders, we have to learn to put ourself first, feel the feelings that come with it and share those feelings when we need to. The people who can support us will stick and the ones who can't will fade away. And it's ALL okay. Kudos to your Andy. He sounds amazing and you are definitely blessed to have him by your side. I miss and grieve "my Andy" every single day. I see all of the chronic sufferers surrounded by healing white light.
Thank tou for this video. I can relate to everything you touched on. It can be very isolating having invisible illnesses. Ive befome very anti people because I feel its so misunderstood. Sending you much love and strength ❤
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤..
20 years dealing with everything you hit upon. I just isolate myself now. I know that's not good but it's the only way i can cope. Friends and family have NO idea how hard living like this is. Great video. Good luck.
Thanks a lot i really needed that. It was like me talking back to me from the other side of the mirror. But for some reason i coudnt talk it loud to me. Being a brain cancer patient for last five year's . I have gone through multitude of treatments, like surgery, Radiotherapy, chemotherapy , physiotherapy. Just recently, a severe seizure struck me that landed me in a ventilator for a week. I was to tried to think and figure thongs out. Your video was needed. Thanks. More strength to you for your logey struggles.
The part about being left behind hit so hard. These were the words I was looking for in understanding of "why I can't just look at the brigher side of things or focus on what I can affect". It's cause the version of myself I envisioned doesn't have these limitations I have. Thank you for sharing , it was personal and insightful
I get you. It makes me waste memories , the fatigue. I am bedbound and cannot w 5:59 alk, have seizures, I have fnd and RA, I lose my speech often. You need talk therapy with a psychologist who specialises in chronic illness it is no good locking feelings inside.
The thing that annoys me with having an invisible illness is that people in general, who don`t understand these kind of illnesses, don't understand that our struggles are not just about pain as they understand it, but so many other things like fatigue, muscle spasms, etc...
Thank you for sharing this. 💗 I’m in the midst of my diagnosis process right now-so far the words fibromyalgia and lupus are being thrown around. Something’s definitely not right and I’ve been healthy all of my life up until now. Videos like this are helpful.
You are awesome! This informative video is giving me the idea to write out my thoughts about my own health because it seems like we are living in an age where we have to find our own space with self care. Now I know it's okay to do that more than I was previously aware. Thank you Elin! Stay strong dear lady, you got this!
Thank you for this video - I've was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) around 9 months ago and I've been struggling a lot with everything you mentioned. All the points you raised regarding isolation and feeling worried about talking too much about it but also feeling that no one really understands. I've struggled with feeling like my friends don't know how bad it really is or just feel like I am overreacting. The only person who I feel like really understands me is my mum who also suffers from an invisible chronic illness. It's so difficult to feel validated when no one understands how bad it is - but you're right that self-validation is so important so I have found that journaling or even just recording myself talking about how I am feeling can be helpful sometimes. I am unbelievably sorry that you are living with an invisible chronic illness as well, but it is very comforting to hear you talk about everything because it has made me (and I'm sure many others) feel less alone, so thank you
invisible illness here, something like the "usher syndrome" since the age of 29
(simplified)
my seeing (6 permanent /temporary different problems, with the seeing though every day) is getting worse, it is possible that im partly blind at the age of 50+ and no doctor can help me to this point, even thou ive been at countless docs and eye clics + therapies where ive paid extra money
and 1 big tinnitus + 1 small, wich als results in a hearing loss every few weeks at random, but something like that is "more normal" on people
it all came from one day to another, by mere random, no normal illness, hit or something occured, just "because" my genes where bored i suppose
have a good one and much power for the future..
i would (like everybody) do anything to get my normal boring health back...life was easy ^^#
Thank you for this. I am on the path toward healing, but there is so much about chronic illness that is so painful. Only people who experience it can truly relate to how you feel. And, because of that, it can feel so isolating and lonely, on top of all the physical symptoms. Knowing that there are other people out there feeling the same way is healing.
I'm currently having skin flare ups as I deal with a chronic skin disorder. There are many things that are hard for me to process, like the one nobody knows the exact cause, that there is no cure, that there are different treatments, which might be useless or even harmful. The perspective is different, physically I feel totally healthy but on the surface it's visible smith is wrong with my body. Emotionally and mentally it's devastating, this condition means social isolation for many of us, meaning love, friends, family.. all those life parts are hugely negatively affected. One learns to live in a shell and hide as much as possible. The mentioned thing about not being able to go for the dreams is very relatable, as I often give up on any art project during flare ups. I also started being more open when being asked how I am. I will definitely try to sleep longer and try to bare with it.
Respectfully! I appreciate your amazing service DR OBALAR on UA-cam , you have always been able to help me with any kind of health issues, I don't know how to face the shame of H P V, I'm grateful I'm .cured with your medication ❤…