My Life with Chronic Illness | Venus Williams
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- Опубліковано 16 чер 2022
- Hello everyone! Hope you are all safe and healthy. This week I talk about my life with chronic illness, specifically Sjogren's syndrome. My life has been affected by this in multiple ways, and struggling to stay on top of my game has been a daily struggle for me. If you are dealing with chronic illness, let me know what you think about this video in the comments section below!
The effects of Chronic Illness: my.clevelandclinic.org/health...
Get involved with the Sjogren's Foundation: www.sjogrens.org
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INSTAGRAM ➤ / venuswilliams
TWITTER ➤ / venuseswilliams
FACEBOOK ➤ / venuswilliams
A class act here, very humble and empathetic in her delivery to others with chronic illness.
How utterly kind!
How do you cope emotionally, Venus? Can view "new you" as a chance to fulfill new, different dreams. Modified dreams, of course:)
I find myself trying to get through the day, and the next and next... Soon a year has gone by, and another one. Need to make extra x 4, effort to break cycle and do something fun and freeing. Hold on dearly to our sense of individuality and personhood. Easy to say, right?! Add on motherhood and, oh boy!
So how does one do this without becoming exhausted from the mere thought of necessary requirements for a foray into adventure land? Get a new doctor perhaps! Lol 🎵 I'm dreaming of opiates
Whoops...didn't mean to send yet.
So sing opiate song to White Christmas tune. Was feeling so well on opiates that was able to see Master's degree as a reality. Then the CDC happened. Posh! Still, we must ALL carry on with "our" life, God willing.
Cheers! I salute all of us, you, for your strength and forbearance! We deserve it!
I concur. I’ve been dealing with a variety of autoimmune conditions. I once worked around US Navy SEALs though I wasn’t a SEAL myself. I was in the peak of my physical condition. 42 years later I’m being tested for Sjogrens. I’m a physical wreck. I really appreciate how Ms. Williams speaks to the reality of this life with such class!
Yes
Thank you Venus. X
Great point about people with chronic illness not "looking" sick. We need people like you to bring awareness to this fact to broader society.
God Bless you the bible tell us all sickness it’s not for death.🙌🏽🙌🏽🙌🏽🙏🙏🙏🙏
Very true, a colleague once said to me I can’t see anything wrong with you but you’re always off sick not knowing the pain we go thru with these auto immune diseases.
PLEASE 🙏🏻 People think you're dramatic, hyperchondriac. No support. I pray a lot.
Plugs don't always work. 7 yrs too for me and many Dr's. I have about 10 autoimmune diseases. Stopped counting. I literally as you know drink water all day. I had hasimoto and goiter grew , emergency thyroidectomy so dryness is every minute even though I have 24 oz. of water all day. Gluten-free helps inflammation too. God bless you, I'm glad you're speaking out for all of us. THANK YOU @VenusWilliams
It took me eight years to be diagnosed with Lupus and Sjogrens. I’m 52 and for fifteen years my family called my a hypochondriac and it affected my mentally on top of the physical pains I was having with my body. Thank you Venus for sharing your story
Thank you Venus, I was diagnosed with Sjogren’s and besides the dry mouth and dry eyes I have Alopecia and have lost a significant amount of hair which is the most devastating to me. Your video makes a big difference because when high profile people talk other people will listen so thank you very much. Keep making these wonderful videos. I’m hoping there will be more natural treatments in the future.
I also suffer from Sjögren’s syndrome along with rheumatoid arthritis and reynaud’s. I also have chronic migraines. Some days are certainly harder than others, but I have to keep moving and taking care of myself.
Looking fine, but not feeling fine makes me feel like people must be thinking I'm just being lazy or exaggerating my symptoms.
God bless you, Venus. I was diagnosed with Sjogren's in 2008. I had a complete health crash the month after the pandemic began. My experience has included nerve pain and joint pain. There were days that I thought about ending it all. I believe God brought me to the right medical team at the right time. Thank you for putting this on UA-cam. God bless your journey
Those autoimmune conditions tend to come in packs too. Sjogrens, Reactive Arthritis, Multiple Sclerosis-and then add 66 years of life of hard physical labor. My life is a HOOT!
I have multiple autoimmune diseases, that have caused me so many problems. Thank you for sharing your journey and for getting autoimmune diseases out there 🥰
Thanks Venus. Wonderful positive way to look at those small victories. I struggle daily with two auto immune conditions. Thank you for the positive out look.💚💚
I tell my mom this a lot, if Venus didn't have this disease, she would have had way more Grand Slams under her belt. She was one of the first athletes that made me remember, they are humans first snd foremost.
Your right we're only human!!!!!!! Lol
@@tinahobbs3273 you're right 😂. I just realized what I said
Sjogren’s Syndrome ain’t no joke-especially, when you have been diagnosed with more than one Autoimmune Disease. Very informative, Beautiful Queen. Thanks for sharing!🙏🏽🥰
I have 6 autoimmune diseases.
2 bone marrow, 1 brain (MS), and the others. They like to gang up on me all too often. Then I get frustrated that I can't get my home clean, do laundry, dishes, somedays it's a struggle to simply walk to the bathroom. (I spent 15 years in a wheelchair and many more using a walker.)
Therefore, I have learned this tidbit:
One of the most important things we can do for ourselves throughout all of the other things we need to do is Be Patient With Ourselves. We aren't being lazy when we literally can't do some things some days (or years...) We are not lazy using a motorized cart in stores because we can't walk for more than a few minutes.
Patience. I pray for patience to handle these diseases with grace and calmness, because getting upset actually makes them worse.
Have a Blessed Day.
Thank you so much, Venus Williams, for this video. I needed to be reminded of these things today.
I was diagnosed with Sjogrens about 25 yrs ago. Every morning I wash my eyes with Bausch and Laumb eye wash with an eye cup. I started brushing my teeth with Coconut oil and a little baking soda. The mouth sores and tenderness left when I stopped using all toothpaste. Any brand toothpaste set off sores in my mouth. Eating a healthy diet is very important.
Thank you for sharing. I'm dealing with the toothpaste issue now.
U
Thanks for the tip re: coconut oil for oral hygiene. 💚
I use Aloe Vera toothpaste - Sensitive version. (Aloe Dent Sensitive).
And once a week I brush with coconut oil with bicarbonate of soda.
This works well for me.
Be careful with baking soda: It can be abrasive on your teeth. Stay strong. I feel terrible for you.
Thank you Venus for this informative video. I suffer from several autoimmune conditions and it is a constant battle to keep life going as normal as possible. One thing I learned after getting counseling for life with chronic illness is "tomorrow might be a better day". So whenever I am feeling down and sorry for myself, i remind myself tomorrow could be a better day. I have to program my brain not to think the worse and give myself positive healing thoughts. Sending positive vibrations your way.
Thank you Venus for your open and honest story with Sjorgrens Syndrome. I'm a senior citizen and was just diagnosed. Seeing doctors for each separate symptom, was not only exhausting it was heartbreaking as no one found a reason for my problems. Being diagnosed a month ago has at least given me an answer. Now, the daily struggle is what I ask God for strength with. You are correct. When you don't LOOK SICK, people just don't understand, the debilitating effects of this autoimmune disorder. Even when you begin your day with the best of intentions, those plans can turn on a dime, to exhaustion, pain and brain fog. 🙏🏼 Keep sharing your experience, strength and hope. My mom and dad and family have enjoyed watching you and Serena play for decades. Be well and God bless you and your family. ❤️✝️
I’ve never heard Venus speak. She’s so sweet, soft spoken and empathetic!
I have Rheumatoid arthritis and Sjorgren Syndrome. Thank you Venus for explaining these misunderstood conditions.
Venus I remember when the press first learned of your diagnoses. You refused to let that be in any conversation when you experienced a tough loss. I think your competitiveness and mental toughness helped you manage it and not allow it dictate how you live. Even Srojan was scared of your fierceness. I think it's amazing you do everything on your terms. When all the analysts + reporters asked you about it you just said next question or I'm not here to talk about that (paraphrasing) 11 years later ok I'm ready to talk to my fans about this. As a fan I want to say thank you Venus. If I can have some of your mental toughness I would be able to better keep my temper in check. My weakness is getting angry with ignorant people easily. The few times I was able to let it roll off my shoulders actually felt great that I didn't let it affect me. But it clearly upset the antagonizer that the failed to get their desired reaction they were looking for. I hope you will do some kind of speaking engagement in the future near or in my hometown in Toronto! I will definitely attend!
i've had fibromyalgia for 15 years, the struggle is real. As if the non stop pain and fatigue isn't enough, people love to say i don't look sick or i should maybe try harder etc... they mean well, but they wouldn't (i hope) tell a person with cancer to suck it up, or try harder.
Was diagnosed today. Took almost 7 years of abnormal blood work and multiple different doctors and visits. Finally.
I was diagnosed with Sjogren’s Syndrome in 2014. The irony is that people of African origin believe that they cannot suffer from this condition. Here you are telling the world that anyone can suffer from this condition. Thank you. Since I was first diagnosed and found out that you had it, I’ve been looking forward to hearing your experience with the condition. You’re the only person of African origin I know of who has it. Thanks again.
i can listen to Venus speaking of anything for hours and i won't get bored ... this girl is so charming , she's so peaceful and it is impressive how haertwarming she is
Thank you Venus for sharing with us about life with chronic illness. As you said one of the hardest parts is that people have no idea how bad you feel as you look “normal”. Even drs and medical personal who have no idea what it feels like to live in our bodies can be very condescending which makes living like this even mor frustrating and stressful. Please continue with the videos and your work as we need an advocate and mentor!
I’m so glad we have people like you with a platform to speak for us! Sjorgrens, Lupus, RA and Myasthenia Gravis here. My 23 year nursing career was cut short, it’s like losing your whole identity. I pushed until my body said I couldn’t anymore. Thank you so much💜
💜
It is absolutely amazing that you are using your voice and platform to change lives. We need more people like you. You are a true legend. God bless you.
Thank you Venus! I was diagnosed with Sjögren’s in 1993. You described perfectly looking well while being sick. I have fatigue a lot. Dry eyes and mouth, and I also started suffering from hair loss some years back (thank God for weave). Autoimmune also runs in my family. Alopecia, lupus, rheumatoid arthritis and Sjögren’s. I have a teenage daughter and sometimes she doesn’t understand that I have to rest. I’m sad that you have this but you being well known could bring more attention to this illness. Thanks!
For hair loss I found a remedy:one folic acid little tablet per day, together with hair, skin and nail softgells.. Do not stop your folic acid. I also take Omega 3 evenings, together with a calsium-magnesium supplement. See how it boots peaceful sleep too.
1
I have Lupus, Fibromyalgia and Sjorgen since 1990, at the age of 37, it took a stroke for the dr to find out that I had it, because I had all the symptoms since I was 17, now I am 68. The worst is like you said because we look healthy on the outside my family think that I am lazy 😢
Venus is an excellent speaker, so personable and likable, with a great delivery and much good information. I just wish she had included the fact that Sjogren’s can also affect and damage body organs with devastating effect. It’s so important for the public to know that it’s more than dry eyes, dry mouth, fatigue, and joint pain.
Some Top most common Auto-Immune Diseases:
● *Graves' Disease* from Hyperthyroidism _(Thyroid Disorder)_
● Rheumatoid Arthritis
● Lupus
● Sjogren's Syndrome
.... and many more.
CFS/ME
@@eleonoravelzeboer155 ... me too
I was diagnosed with sjogrens after my opthalmologist showed concern about the pitting in my eyes due to dryness. Although my lip biopsy came back negative, I was still treated with immunosuppressants. Within 6 months, I showed improvement. After a year, I no longer required upper and lower tear duct plugs. Every 6 months I get a field of vision test due to the meds.
What a lot of ppl don't understand that sjogrens has many co-morbidities. I was diagnosed with CFS/me after mono 7 years ago. Then came a POTS diagnosis and fibromyalgia. I take 22 meds a day to keep me upright and moving. I went from working 14 hour days as an education director to being disabled within a year. It took a long time to adjust to my new normal. Instead of focusing on what I can't do, I celebrate what I can do.
Most recently, I'm recovering from my 2nd brain surgery in 16 months due to trigeminal neuralgia. I think the 2nd one worked 🤞. All these medical issues has taught me that it's okay if you don't get out of bed on bad days. It's okay to cry, vent, be angry - I just learned not to dwell on what I can't change. I learned to accept my mobility devices rather than be ashamed. I became a much stronger and more empathetic person because of my chronic illnesses.
Thank you for sharing your experience. Invisible illnesses are so misunderstood
Living with chronic illness is hard. Im glad you doing ok. Brain surgery is the pits indeed but Im glad that your second surgery was successful.
I have fibromyalgia and I definitely know what your talking about. I am so upset with the pain and joints I just can’t always be up I’m laying in my recliner, bed, resting up is not the way I am. I m active and 67 . But I have did what Serena just said so I tried to do other things that I can. I pray you are all going to be better. God bless you all.
@@1171 I'm sorry you have to deal with the pain. It is such an energy drain. I use medical marijuana - hybrid during the day, indica before bed. It takes the edge off the discomfort but - more importantly, imo - it helps me mentally cope. I just turned 51 and rarely leave the house anymore (mainly for Dr appts and port flushes). Funny how one can forget what life was like being able-bodied. It sure opened my and my husband's eyes regarding accessibility and the financial burden of being chronically ill
Thank you Venus. I have suffered with Sjorgrens for decades. But I couldn't get people to understand or to take it seriously because most of the time I looked fine, as you say. But I felt miserable, weak, confused, and alone. People seemed to think I was lazy and complaining about every little thing.
What they failed to understand is that the disease exacerbated every illness I got, from a cold to when I got Covid. Even the vaccines made me sick, having joint pain so bad I could barely walk or raise my arms.
And most doctors have no answers either. So, like you, I've had to learn to monitor my food, supplements, sleep, stress, etc, to function. As a result, I'm doing okay.
Thanks for speading the word.
Thank you so much❣️you’re so right, people with autoimmune or chronic illness don’t look sick, even on days when you’re feeling really sick
I’m so glad you’re bringing awareness to this
God bless you 🙌🏼🙌🏼🙌🏼
Queen V! You are beyond an inspiration. It took so much courage for you to continue play after being diagnosed. You are my favorite tennis player ever! I love you! Stay well and continued success.
I have Sjorgen’s also. Yes, not long after, I found out that I was suffering from osteoarthritis. My endocrinologist gave me cytosine infusions. He had me on so many medications. One day I just asked my self, do I really need to be taking all of these. My answer was NO. I SWITCHED doctors. The new doctor gave medicine for joint pain. Time release throughout the day. This medication helps me to move throughout the day. I got rid of the prednisone and a couple others.
I have learned that fresh fruits and vegetables are very good for my body. No process food. I stay away from red meat. ( I do eat about 4to 5 pieces of steak once every 6 months) I mainly eat chicken and fish.
I find myself requiring a lot more sleep. I have slept a whole day before. Felt very full of energy when I got up.
And there are days that I feel like staying in bed.
You wonder how did this happen? Why me?
Very chronic fibromyalgia here for 30 years. Good tip: Focus on what you do accomplish instead of what you cannot. TY❣
Please keep speaking about this awful disease. Most people in the UK have never heard of it. It can affect a lot of systems in the body and can go undiagnosed. Please please keep talking about it Venus. Thank you x.
If you are looking for answers - check out a Carnivore diet (DR Ken Berry youtube a good place to start). So many people are needlessly suffering with these auto immune disease because we are being told to eat lots of grains and veggies, but these foods can be very inflammatory to humans. Thousands of people are curing themselves of auto immune disease using Carnivore as an elimination diet. Best of luck to you.
Thanks for this. I have Sjogrens. I had to stop working because it hurt so bad, I'm a nurse. I started researching. I started taking vitamin D. I gave up processed food, artifical sugar and sugar. I only eat nutritious whole foods now. Low carb high fat. (No seed oils!) Recently my ANA went from positive to negative! Nutrition has been the key for me. The American diet is full of poison. They sell food additives here that are illegal in other countries! I believe that was the cause of my condition. I wish you the best.
Hey Venus! Thank you for making this video. I have been diagnosed with Sjögren syndrome when I was 11 years old (I am now 24). Sometimes it is really difficult to live with it but we'll keep going! Thank you for making this video and explaining, other people have an hard time comprehending how it feels to have it because you can't see it from the outside. I want to say that you've been my inspiration for years; to know that someone of your level has my same illness, it makes me feel better and it makes me keep going to reach my goals! Love from Italy
🙏🏾❤️ua-cam.com/video/4z-QoNOVdOY/v-deo.html
I have lupus is not nice and people say you look good as people never see the pain. Thank you you are very kind❤❤❤
Thank you, Venus. I wish my daughter could have heard your kind, calm advice. She passed away at 37 from complications of Lupus, Type 1 diabetes and Sjögren’s syndrome. It’s very lonely at times having an autoimmune disease. Thank you for sharing with others , I’m sure it will help.
Im really srry for your loss. My mum has lupus and has flare after flare. She has lost a lot of vision, has kidney involvement but still works full time and rarley has time off. I dont know how she does it. Lupus can be such an awful disorder.
@@twistedcherrypop my heart goes out to you both.❤️
I love listening to these open, face to screen talks. No distracting music or guests just your voice and your words 🙂
I also have sjogrens and the fatigue is debilitating. No amount of exercise helps but I’m learning to do what I can and try not to stress about what I can’t. The biggest obstacle is that I look absolutely fine so people just don’t get it. Thank you for being a voice for us!!
I get it. I have MS too and have finally had to stop working. 51 years old and filing for SSDI is something I never imagined. My doctor also believes I have SS, so I'm addressing that now as well. It all makes sense once you put the puzzle pieces together, but what an awful journey it has been. God bless you. ❤️
I have Sjogrens and 1st symptom was in 1975 after my brother was killed by a drunk driver. Crying every day, dry eyes then became a problem, no longer could wear contacts and horrible foreign body sensation. Also, corneal abrasions over many years. Then in the 2000s came repeated cavities after dry mouth became troublesome. I now only have have my teeth with 3 of them broken. I had braces & jaw surgery for a congenital defect in 1980.I had a beautiful smile. One dentist a few years back wondered why I was getting so many cavities. All he focused on was diabetes, I'm only borderline. If he asked about any other dryness symptoms, he would have had his answer. Unless he was not familiar with Sjogrens, but dentists should be. My ENT did a biopsy and BINGO, Sjogrens.
I also suffer with UC, another autoimmune disorder. Many other problems, significant mitral valve damage, and complicating everything is a genetic neuropathy found by DNA testing. It is rare and is different than what is related to diabetes. It also has taken its toll on my body.
If anyone has any unusual dryness symptoms, ask your doctors about Sjogrens, cause it can cause serious problems. The 2 main dryness symptoms are the dry eyes and mouth.
Sorry this is long, but I feel education has fallen short in the medical field, but more so in dentistry. 🦷👀
Thank you. I have Lupus, Hashimoto’s, and RA. I also struggle with chronic dry eye. Fatigue is such a struggle that others do not understand. I try to be compassionate with myself despite judgement from others.
I was diagnosed with Sjogren's late fall of 2019. Fatigue is the symptom I find most difficult to cope with. It's frustrating to be tired all the time. Thank you for sharing your story. Hopefully more people will come to understand with it's like to live with chronic illness.
Wonderful video. As a board certified orthopaedic surgeon I found great wisdom in your explanation. I don't see too many patients with Sjogren's syndrome, but I will be more vigilant in looking for it. Antinuclear antibody testing (and its variants) can be helpful, but not foolproof. I was fortunate enough to meet you briefly when you came to Vermont and I will always cherish that moment. Kind Regards, Craig
She should be a doctor. She’s really great at explaining things and her energy is very comforting.
Coming from an underprivileged class, I had to work extremely hard to overcome financial and undiagnosed intellectual challenges to achieve academic success. However, at the height my career, I was crashed because of unexplained chronic pain and depression. After 7+ years of suffering and being routinely called as hypochondriac, finally I got the diagnosis for Sjogren's syndrome and Rheumatoid Arthritis a few months back. I am making significant changes to my lifestyle along with taking medication, but it has been challenging. Thank you so much for sharing your illness and tips to living a balanced life. You sisters have always been the inspiring figures for me while growing up, but now I have even more reason to get inspired in living a fulfilling life with chronic illness.
🙏🏾💜💜💜
Venus did a marvelous job of teaching about Sjogrens Syndrome ! She is so articulate…GREAT speaker; so genuine ! Thanks Venus.
Thank you Venus, I have it too. Use eye drops morning and even ing. Because of lack of saliva, drink water together with eating. Eat Green veggies every week, to prevent mouth sores. I am photosensitive too. Stay out of the sun, and places where UV rays get reflected to you. Yes lots of sleep. If I have a flare up, I take anti inflammotary meds together with a pain killer. Try to stay away from cortizine as much as possible. Stres and too much exercise as well as a storm bewing outside, Will give you a flare. Once I ate a whole slab of chocolate, and had a huge flare.
Secret is, Live a quiet lifestyle with as little stres as possible, mild exercise, and eat healthy. Lots of fruit.
I was told that i have "Dry Eye Disease" by the 5th eye doctor(OD). Asked my internist for blood work for Sjögrens and found it , and it was confirmed by a Rheumatologist.
Dr #5 prescribed autologous serum eye drops, which are made from my blood and I apply 4 x day. I'm into the 3rd month and my eyes are so much better. I'm 81, practice Yoga 3 x week (20 years), walk 3.2 miles M-F (30 years), My mystery is that when I travel, I don't have dry eyes at all. The 3rd eye doc (OD) suggests that the local pollution is causing my severe dry eyes. I apply hot compresses 2 x day and use OVC eyes drops prophylactically 3 - 4 times during the day. I hope this story helps someone out there. Thank you Venus for sharing yours.
Sleep, exercise and proper diet is so important as we get older
I began experiencing IBS , and it’s been the worst year since I lost both parents in 2011.
It’s awful. The Gut produces your hormones and emotions by sending signals to the brain.
Some days it feels like I have a spoonful of energy.
By noon, I just can’t keep on.
It sucks… but! Learning what helps is the key.
Light meals, no stressful situations that are unnecessary, and communicating with your loved ones how you feel.
Put yourself first.
You are not alone
Doctor Brooke Goldner GOODBYE LUPUS totally healed of LUPUS
All autoimmune have a cure that goes contrary to anything we’ve been taught
Zero plants
Zero carbs
Zero seed oils
Eat steak 🥩, and butter and drink water for a week and be amazed as those symptoms go away! CARNIVORE DIET = No inflammation
So sorry for your loss
Thank you for sharing! The fatigue is horrible and you are right about people not understanding that you just don't feel well when you look "fine"!
Tired of close people who can’t understand the difficulties we face on a minute to minute basis. When I say am tired, they think it is the tiredness they feel and not understanding the intensity of our fatigue.
I was diagnosed with Sjogrens in 2013 and I knew if you could get through it, so can I. I lost my teeth in 2014 uppers. And just 2 years ago I finally had insurance to cover getting the lower teeth pulled. I suffered for years with tooth rot. I'm happy to say This Tuesday I am getting lower implants. . It took years to save up. I do get flairs and I do also have RA. I'm doing relatively well. Anyone who says God won't give you anything you can't handle hasn't had an autoimmune condition.
God bless you, Venus... autoimmune disease is so difficult to deal with.
YES IT IS!!!
I have been diagnosed with Sjogren's and Lupus. It's life changing but I have great support at home. I thought when I couldn't make it out of bed, I was "being lazy." Glad to hear you as well have those moments. Not just in my head. Take care.
Thank you for addressing this chronic illness. The symptoms may not sound that bad, but they are life altering. My mother battled several autoimmune diseases her whole life. I took care of her the last 10 years of her life. I now have both my dad and my brother living with me. My brother also has an autoimmune disease. They do tend to run in families. I am their one and only care giver. Some days I just have to crawl around to care for them. Because I am a caregiver to 2 family members, I do not have a job with income. So, not only do many of us battle a disease, we also battle constant crushing debt and no income. My daughters help me inch along but it is not a fulfilling life. Be kind to everyone you meet. The surface may look calm, but believe me, the insides can be battling huge waves. Thank you Venus.
I am a retired nurse. I was very fortunate that my eye doctor diagnosed this along with a corneal disease that causes corneal ulcers. I also have a type of arthritis that causes extra bones to grow along different parts of my spine and causes my ligament attachments to harden. None of my family had these, but they had a rare genetic heart problem that took all 3 brothers and my father’s lives. I really appreciate that you are sharing your journey. Because you are high profile, you have more impact than 10 doctors or nurses. I’m very sorry you had to quit competition tennis. I finally had to medically retire about 4 years ago. I feel your pain. I was not a person who rested. I really struggled giving up my job and all my volunteer things. And I get angry when someone says I don’t look disabled when I get out of my vehicle. Many people for sure will benefit from what you have shared. Forgive my rambling.
Thank you. It's so true when you don't look sick people don't always accept that your not well.
I do not how this feed came to my page but glad it did. I am experiencing similar symptoms .My flare ups are very uncomfortable. I am in the process of getting a diagnosis as to what my chronic illness is. There is hope, that, there is a name for mine. Thank you for sharing
"What's important to understand is that you don't need everyone to understand." Perfect!
Got diagnosed when I was 25 along with HIV. 30 now and it's been a hard week. First time ever that the pain is beating me and really effecting my everyday. It's really messing with my mental health😅. I hate not having control of my body
I must apologize. I was super upset when your tennis dropped off years ago, but wasn't aware you had a nasty illness until a year later. I was so use to seeing you (and your kid sister) beating up on everyone. I still love you very much and I wish you all the best with that nasty condition. By the way, I have one too, Sarcoidosis. These conditions are very rough and they will test you! Thanks for sharing. 🥰🥰
I also have Sjogren's, but my version means that my eyes are so dry that I am actually unable to produce tears. I would never have guessed how difficult that one little detail would be, there's something about the emotional release of tears that is irreplaceable.
Thank you for putting this out there. I hadn't realized I was feeling isolated in my illness, and this video made me realize that I need to rely on my support system more. Also, brave of you to post a video about your illness, especially considering the number of comments telling you all the ways you SHOULD be dealing with it. Be well!
Pleas don't call it your illness, is a condition that you have, NOT YOUR ILLNESS,.
BLESSINGS FROM ABOVE!
@@leticiawilliams2746 That distinction is meaningless to me - it changes nothing about my symptoms, their effect on my life, or how I deal with them. And you obviously missed my point about it being inappropriate to tell someone else how to deal with their "condition" or whatever they choose to call their personal circumstance.
I haven't been able to cry for years. I wonder if I have a mix of osteo and rheumatoid arthritis.standing takes forever. Pain and stiffness
Fingers and toes are very painful.
I got diognoised with Sjogrens Disease in 2018. Before this I just kept thinking I was unfit ,unhealthy and lazy. But once diognoised it explained everything I was feeling. SLE(Lupus) showed up in blood results as well. I have almost every symptom of Sjogrens. Its effecting my internal organs now as well. Lots of people with Sjogrens can't have grains due to IBS issues. Also I am limited with fruit due to high level of sugar content. My liver is in a bad way. So this is something to consider with food. Like you I had to give up my career. I was a vocal coach and lead vocalist in bands and duos for over 30 years. I felt my voice changing and tried to work with it, thinking it was my age. I lost my singing voice. I went from 4 octaves to 1. Now I can hardly get through one song. I lost all my 48 students and had to close my singing business I worked so hard at. In 2022 I was diognoised with Fibromyalgia as well. There is not one day I have no pain. During a flare up I can't do anything. Auto immune Disease has changed my whole life. Coming to terms with it is still so hard. I find doctor's know very little and also don't really care. We go into the too hard basket. My Rhumatologist said at last appointment, there isn't really anything we can do. My body is reacting to any medications they tried me on. I have turned to medical cannibis which seems to be the only thing that helps. And quite a few vitamins. Thankyou for coming out and talking about this. I don't have much support. People just say get on with it, don't believe me how bad it is. Also are not interested in listening either. Its nice to know we are not alone. ❤
Hi Natalie Gill, if you need to talk to someone I'm here to listen
NATALIE Gill. I deal with fibromyalgia and join the water aerobic
Feel you! Stay true to yourself- don’t be concerned with others . Spend time on you and others that accept your condition 🙏
I have Ehlers Danlos, Sjogren's, Reynaud's, POTS, Mast Cell, Fibro, etc. lol it's like Pokemon, got to collect all the rare illnesses. Have you looked into EDS? Because lot of us started out diagnosed with just Fibro. Reason I say it is the singing thing, turns out having EDS gives us some special ability to have a huge vocal range, I guess due to our stretchy connective tissue idk. There's a lot of famous singers who have or may have had EDS including Elvis and Prince. Medical cannabis has helped me a lot too. I get these gel tabs that are super helpful. I was on pain meds for years and finally got off thanks to the Ouid.
Please try Bioptimizers Magnesium fir your muscle and joint pain... IT HAS made a huge difference in my daily pain levels ...my fibro condition is so much better..I just wanted to share what is helping me..
I was diagnosed with Hashimoto's several years ago. My older sister has it as well. Recently, I have been having a real problem with very dry mouth and extremely dry eyes. Sometimes when I wake up in the morning my eyes are so dry I can't open them. If I manage to get them open the pain is so intense I am practically blind for 20 to 30 minutes. When I went to my Endocrinologist for my thyroid check up and I told him and he thinks I now have Sjogren's Syndrome as well. My family has a history of autoimmune diseases. My older sister had Rheumatoid Arthritis so bad she was in a wheelchair by her late 40's and then passed away in her mid 50's. I could have other autoimmune diseases I just don't know about yet so I am off to another doctor. The struggle with chronic illness is no joke.
I am Type 2 Diabetes, suffer from Fibromyalgia, burning feet, running eyes. Having Diabetes, sometimes it feels like I am sleeping beauty.
I can't help but wonder how many Grand Slams singles titles you would have won had you had perfect health, though I'd say 7 is still a hell of an accomplishment!
I thought about that, too. I remember years ago before her diagnosis when I noticed that Venus’ performance was declining. When she revealed the diagnosis years later, it all made sense. She is an amazing woman who achieved so much professionally, despite her illness!
Just diagnosed with Sjogrens and lupus .. already have congestive heart failure diabetes insulin dependent and kidney failure 😢 .. I'm tierd .. but thank you for this video .. ❤
I'm praying for you!!🙏🏾🙏🏾🙏🏾
I am so sorry for your suffering sister. I pray for your complete healing in Jesus name. Amen.
@@t.ferguson8002 Thank you so very much for your prayers .. Our lord is so good .
I was diagnosed after my marriage of 32 years failed because in his words "I was just sick too much". I was still working full time +, keeping up the house and yard by myself and doing all the finances, shopping, etc. I would be so exhausted and in so much pain that I would just collapse in the shower on the floor and cry. I have since been diagnosed with many autoimmune diseases after about 2018. About 12 years after my husband left me. I only got help after a friend recommended me to her Rhuemotologist. So your video has probably reached and helped so many. My friend helped me so much. I am never going to be healed of course but I have gotten on meds where I can function better and am out of bed more. I did finally have to get tear duct plugs. So glad I did. My eyes feel so much better. I was put on plaquenil and it also put my IC of the Bladder in a kind of remission. Which by the way I later read it is common to have a long with Sjorgrens. Again thank you Serena for reaching out to help us all
Just an fyi....That would be Venus your texting to.
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Venus i am so sorry you are going through all this with the autoimmune disease. I know each one is very painful. I too suffer from an autoimmune disorder, Psoriatic Arthritis. I can empathize with you thoroughly. I am on auto injector shots every two weeks to help my agony. It's been a miracle. I hope and pray you get the proper care to relieve your pain. God bless. Sherri, Jupiter, FL.
Venus thank you for opening up about your struggles and teaching us. God be with you Venus and bless you with good health.
Thank you so much, Venus Williams!!!
I have had this since I was 36. I came to LA to pursue acting, and instead got bad endometriosis which was accompanied by Sjögren's syndrome, then depression, (on the happy side, marriage and two wonderful kids) but at age 50 it also morphed into Pseudo Gout (painfully swollen hand joints and knee joints) and now, Hashimoto's. Auto-immune is an invisible disease that almost nobody understands. They cannot see the fatigue, the loss of dreams and stamina and chronic pain. The coping with the high financial and emotional costs of this diagnosis is really significant and I so appreciate you using your voice as the female superstar WARRIOR that you are to bring awareness to this physical condition that so many people do not understand.
Thank you so much. We SS and chronic pain survivors all appreciate it.
Thank you for showing the masses that it is possible to live a happy, healthy lifestyle with a disability/chronic illness!
Thank you so much for talking about your life with Sjogren's Syndrome. It is so often misunderstood and is so hard to explain, especially with primary Sjogren's. I wish that someone would do a national campaign talking about Sjogren's, give this autoimmune disease the attention it deserves. Thank you again.
I was diagnosed with sjogrens syndrome this last year after dealing with RA for over a decade. I appreciate your experience and openness. Fatigue is a tough part.
Just to add: Sjogren doesn’t have to always manifest with dry eyes.
I got diagnosed 2 years ago because of lacking saliva, fatigue, wandering joints pain etc.
I had mouth biopsy to confirm it, many more blood tests, but I don’t have dry eyes.
Thank You Venus for bringing awareness about this syndrome ❤
Newly diagnosed, tho have been diagnosed with other AI for years, but yes! Everyone focuses on the dry eyes/mouth. My eyes are fine and mouth maybe a little dry but all the other hallmarks of AI are raging. I read ppl don’t get dry eyes for many years and sometimes not at all. But both my hands have been operated on for new joints and I’m only 51. 🤷♀️
@@flouncymom I’m sorry to heard that Dear. I had for years pericarditis. At least one time a year and later twice a year, doctors decided to dig deeper. Since my teeth we’re in terrible condition the decided to run mouth biopsy. Technically it’s not like a don’t have saliva at all but about 30 percent of what I suppose to. Was never bother by it because all my years I haven’t think about the fact I can’t splitting like other is actually a symptom of something bigger. I got rid of all my teeth and one year later I got implants … since then I had no pericarditis ♥️ but as above I do developed fatigue and wandering joints pain form time to time, stiffness as hell but I am happy I was diagnosed. AIP diet helped me a lot. Take care!
@@A.S.Heathland the body is fascinating and so strange! But, yes, who'd think a lack of saliva was actually something much larger and debilitating? I'm once again trying to find a regimen that works for me, even somewhat. But I def think diet and nutrition play a big part. As does taking care of yourself mentally and spiritually. I wish you the best!!
I so appreciate this. I have Sjogrens and several other auto immune conditions. Your so right about “we look fine”. I work a full time job and it’s a very demanding job, so everyday when I get home I “crash”. Then have to start again the next day. People just don’t understand it. I so wish there was something that could help us live with it better. Thanks for sharing your story.
You still look good, girlfriend. I just got diagnoses with Parkinson's . Devastation!! But God is still in control. He can change anything my sister!! BELIEVE!!!!
Lately I’ve had severe joint pain and fatigue. Being holistic, I know there are certain foods that don’t agree with me-sugar, wheat, diary, etc.. but foremost the biggest change In my life has been stress and anxiety. The foods are controlled factors- eliminate them. But the stress and anxiety have been hugh issues. I’ve changed the way I process comments from others or my reaction to external forces. In other words, I began to believe in me again. Thanks for sharing!
I also have sjogrens and found out 4 yrs ago. It’s not an easy to keep a handle on. People don’t understand the pain, brain fog, I feel like my brain is just not working anymore. Mouth dryness is unreal, tongue stuck to the roof or my mouth every morning. Skin very dry, scalp itchy, there is no cure. Yes there are meds, but not without risk. I have one kidney since I was 19 months old, and I can’t take most of the meds that would give me relief. Some meds you can’t go out in the sun without a shirt, hat, pants. It can also destroy your eyes so eye check ups are a must every 3 months. You have to try and hang in there, yes a lot of days you just can’t do a thing. Fatigue is real, it’s not being lazy, you just can’t do a thing. Venus thank you so much for your story. Sometimes you feel people are just looking at you saying what the hell is the matter with her. I also have fibro, and OA. It’s a struggle almost everyday but fight or go back to bed.
Try Zylimelts at night. It helps.
I also have sjogrens, I am dealing with my teeth all crown, 4 implants and it never ends... I think dental should be coverd in health care insurance, sixty five thousand just in the past 3 year out of pocket. It's a constant struggle, along with every thing else that come along with the many pit falls... but I do my best dealing with it.... thank u 4 sharing your struggles, we deal and it a challenge. Thank u again. Lynnae
I believe I just read that they are trying to code sjogren’s so it will be covered under insurance. Not sure when this will take affect so hang on
Thank you Venus for sharing such a private story. All I can say is you are super strong woman and never ever stop doing what you do
It's a pleasure hearing you speak. I'm no stranger to autoimmune diseases and I get the frustration but we have to move forward because what other options do we have?! Lots of love from Bavaria, Venus!🤗
This information is so much helpful to me because I am going through the same painful situation.
Please watch Dr Brooke Goldner UA-cam channel GOODBYE LUPUS she is totally healed of LUPUS and the other diseases.
Hi thanks for sharing your experience. I too was diagnosed with sjogren's syndrome and RA after my cardiac arrest in 2016. It affected my work, my ability to sing and take my boys to there sports training. What changed my life was having done multiple Gerson therapies, learning alternative holistic practices that changed my life. My RA went away, my CHF went to normal and my Sjogren's is under control. Currently, to address my sjogren's I stay away from carbs, dairy, processed foods. I supplement daily with minerals, vitaminas and wealth of other things that have been standing and stronger than ever. As you stated all autoimmune disease is a target of inflammation in a different part of your body. Learn what your blood type is what you can eat and cannot eat. Stay away from Milk, grains, bad cooking oils (veg, canola, corn,) and incorporate good eating practices to obtain optional health. Incorporate alternative holistic practices to bring homeostatis to your body and avoid flareups. I was a food junkie and had to cut out snacks, juices, rice, bread, pasta and anything with corn. The rhematlogist was testing me to see what meds would work and got tired of being an experiment and decided to take charge of my health. When I do get a flareup I think about what did I eat to get here and completely eliminate it. Take b12, magnesium is your best friend, curcumin in foods, vit C, vit D, folic acid. At this moment, my teeth are breaking quite rapidly and my eyes are getting inflammation. So I take a good source of Omega 3 and do a natural tea for my dry mouth that has done wonders. Medically, there is no treatment to help with sjogrens but you can start by stopping carbs (all carbs) and implementing a Gerson therapy from a good source to detox from parasites, bacteria, infection, mold and mucus that is in your body. Trust me I'm a different person today. I thank God for helping me everyday. I hope you all get better soon. I'm now working on getting certified as a holistic coach bc it has not only helped me but my family as well as my three athletics. Blessings on your journey and great health.
I suffer with severe RA. No one realizes auto-immune until they've walked a mile in that person's shoes.
I've got RA and a year ago I started taking 'stinging nettle tincture' it really helps with the pain especially in hands and feet. Give it a try
Love you!!!!! I commiserate having scleroderma, Reynaud's, and Fibromyalgia. It is hard. And if I had a nickel for everytime someone said: " you don't look sick".......
My sister has this disease. I had to do research because she would never discuss it. I have MS and it’s not a picnic either. Have an awesome day!
Isaiah 35:5,6
I have Sjogrens and it puts me to bed 3 to 5 days a week. My joints hurt, headaches and my Sicca is off the charts. I'm tired of being sick!
Prayers for all of you
focus on what you were able to accomplish, and not on what you didn't. Thank you for that!!!!
Thanks for sharing. I didn’t know I had a chronic illness until it was too severe and became bedridden. Listen to your body guys and never ever overdo it!
So sorry. I pray for healing for you ❣️🙏🏽
I have hypothyroidism and I believe it took over 12 years to come to the point of severe chronic fatigue to get diagnosed.
I just found out that I have Sjogrens Syndrome, and everything you've said resonates with me, especially what you've said about others thinking that you're fine. For a long time, I couldn't figure out why I was so tired and couldn't keep up with others. Thank you for this positive video. It helps put things in perspective.
Thank you so much Venus. I have been living with SS since 2010, but it hasn't really been diagnosed definitively. Your presentation puts all of the pieces together. The flare-ups, the need for rest, not being able to live up to my own high standards, not appearing "ill,"--you have clarified all of this. Very grateful to you for sharing your experience. Much love ❤
Thank you Venus! I have been sick since 2008 and not one doctor has informed me as much as you just did!
I have three auto immune syndromes and when they all flair up at the same times it's hard. I deal sjorgren, RA, and fibromyalgia, now that is a mouthful. The meds lower my immune system and i have pnuemonia several times but I am still here even after a horrible case of Covid! Thank you for sharing your story Venus.❣️❣️❣️
@Norma Coxie. I hope you haven't received the "v*****e. I'm an RN with more than one autoimmune disease as well and I'm trying to warn people.
@@danacaro-herman3530 Thanks for your concern!
Ms. Dana no I have not received the v......e ad will not!
Thank you. I was diagnosed with Sjogren's Syndrome last year, and so much of what you say here is true for me as well. This is an autoimmune condition that a lot of doctors know little about, or they think it is limited to dry eyes and mouth, whereas it can involve every system in your body. When high profile athletes such as yourself publicize your journey with sjogren's sydrome, it really does help the disease to become better known.
Very helpful. People see that we look normal but don’t know that we are not feeling well at all. 🙏🏿