I used to do everything for everyone…a yes girl. As soon I was diagnosed with Lupus, and feeling unlike myself and getting sick often, I heard friends and family say I was too dramatic, that I didn’t look sick, it’s all in your head, etc. I am now in stage 3 kidney failure (not on dialysis), heart failure, severe neuropathy as well as a laundry list of other illnesses not to mention the severe fatigue. To the friends and family that have distanced themselves from me since I’m so dramatic and I’m no longer their do girl, I pray you never ever have to experience this disease.
Yes, I've heard this comment also. It really hurts me. Not all people with cancer survive and that's heartbreaking, but on the flip side, a lot DO. And when they recover, that chapter is not closed, but the illness in itself is gone with treatment. Where as with lupus, you're sick forever and stuck... So yeah, I can totally relate by far. I have cns lupus with epilepsy, lupus nephritis, and sjgrones.... Thanks for the video. Praying for you ALL. ❤❤❤
I have heard the comment as well, heck I even thought to myself “at least it’s not cancer”. I was diagnosed this year with sle and I did not realize how hard some days were going to be. I ended up having nerve blocks in my head this year because I had a headache for a month. I am also for the first time in my life battling depression. I had trouble finding doctors in my small town that know what to do with a patient with lupus. My mom, dad, 2 aunts, 2 uncles and my grandma had cancer. We lost my grandma and my uncle so I have now seen both cancer and lupus and the bottom line is they BOTH SUCK but we need to keep in mind that each person is still fighting a battle and just ask if there is anything we can do to help.
I have RA and people don’t understand the difference between that and osteoarthritis. I have pretty much every lovely symptom that Lupus and RA share. I relate to so many of your videos. I hate when I express that something is challenging for me, or that I want to find a different career path because of my RA and people tell me, “it’s just arthritis.” I’m pretty polite about it but it can be difficult when you can’t get out of bed because your suddenly anemic, light headed, your chest hurts and your eyes and throat are so dry it hurts to open them. But it’s “just arthritis”
It is very difficult. Yesterday I could hardly do anything because of my joint pain, and with lupus the joint pain is not as damaging as RA. They wouldn't be saying that if they were living it.
Yep. Before I was diagnosed I had tests done to rule out cancer because my white blood cell count was so low (whole story on my channel if you’re interested) and when I tell people that they are SO relieved that it was “only” lupus
amanda green story of my life. I was going through a lymphoma diagnoses and once my lymph nodes were found not to be malignant everyone would say this to me. It’s so horrible and frustrating because I’m stuck with this for the rest of my life.
I have Sjogrens and RA. People said that to me until I did get cancer...I am NED and most of my most serious health issues now are related to Sjogrens and RA. Very informative and thank you for discussing this.
Yes I have been told "at least its not cancer." I think the controversy arises because they don't get that cancer patients will either fight and win or fight and die, whereas lupus patients will fight and die or fight and fight and fight... (of course I know some people have multiple cancer battles). One is not worse than the other. It's not a competition. Both could be deadly depending on the situation. But by say "at least it's not..." they are minimizing our situation. It feels the same when someone says "but you don't look sick." Don't let the haters get you down. You are an amazing, encouraging, companionate person. If someone doesn't see that, they aren't paying attention.
I have heard this. It was when I was on low dose chemo for my lupus. I posted an update about it on my FB and my mom’s cousin seemed all concern about why I was on chemo. I explained to which he replied “oh well thank goodness it isn’t serious like cancer”. 🙄
Thank you for the information on Lupus, was diagnosed last December, being told that you have cancer for me was devastating at 26 with a new born, another baby of 2years and another at 5years was hard, I've had my share and then some over the years, now 64 and coping daily with Lupus is very difficult but have to do what I have to, to survive because everyday is a new day, thank you again for your videos, I'm praying for all, God Bless
I am 56 years old and was diagnosed with Lupus when I was in my 20s. When I moved from California to Louisiana in 2010 I have had doctors continue to tell me that I do not have Lupus and that I have Sjogren’s only. The last rheumatologist I talked to 3 years ago told me that it’s not Lupus unless you have cancer. I never heard that before and felt angry that he would tell me that. I stopped trying to get doctors to treat me for lupus. In August I was diagnosed with breast cancer. The first thing I thought of was way did that doctor tell me that? I should not have stopped taking Hydroxychloroquine.
I Have Sjogren's and it pisses me off when people are like never heard of it and don't know anything it can do, and it's wrecking havoc on my body the last month so badly, and so not easy to live with, so over what ppl say
Sjogrens is a tough one too. I know I talk a lot about lupus on here, but the dryness and salivary issues from my Sjogrens really affect my day to day quality of living.
Most people are really supportive to me, though some people can make comments implying it's not 'that bad'. When you just got out of the biggest flare have just been diagnosed, you don't want people to compare you to people who might have it worse. It just doesn't mean that struggling with Lupus is not 'that bad' just because there are people out there that struggle with diseases on another level. I totally relate to what you're saying.. I'm struggling with Sjogrens, Lupus and Raynauds and have been officially diagnosed since january. Loving your channel and videos!
I have an immunodeficiency and I'll be on immunoglobulin replacement the rest of my life. I also have UCTD and MGUS from the immunodeficiency. One of the doctors that manages my condition is a hematologist. Every appointment he reminds me that it's not cancer, and then kind of chuckles. I've never been a "woe is me" kind of patient. It was upsetting to know I'd be on a time consuming, painful, expensive infusion for the rest of my life. I was relieved to get a diagnosis and the fact that there's treatment, yet that "well it's not cancer" comment is like saying the person has nothing to complain about.
I have a couple of autoimmune diseases and a lot of people have said this to me. I find that people don't really have that firm of an understanding of what cancer even is and then obviously no understanding of my diseases or what happens when you have it. It is incredibly upsetting to me because it's as if my diseases and sufferings don't matter since my diseases don't fall into this specific class of disease, as if they know what they're even saying. And I am sure it get's frustrating to cancer patients to hear "at least it's not cancer" all the time to cheer people up or invalidate others, people will use my being sick to tell people they ~have no excuse~ which is so infuriating in many ways.
I just want to say thank you for everything you do. When I was diagnosed three years ago I discovered your videos. I was terrified. I thought you were so brave and you inspired me. Thank you for sharing your journey and your experiences and getting the word out there. And thank your for taking time out of your day to respond to us. This video just makes me grateful for a lupus warrior like you.
Thank you for all the information you give in these videos! I’m going through kidney problems due to my lupus not to mention open heart surgery and 3 strokes... hugs 💜
This is one of the most annoying things I had to deal with. My grandma doesn't 'get' lupus. After she saw me loosing lots of weight, beying extremely sick etc. She just decided that my doctors came up with this lupus thing and that in reality I have some sort of cancer. It didn't help even reading articles about lupus to her or taking her to my appointments. Unfortunately lupus is not a 'trendy' illness to have
Yep. I've heard that phrase many times. I try to be understanding because maybe they don't know what else to say, but it still does get frustrating/upsetting because they make it seem as if our disease isn't difficult.
When I m in significant flare of fibro I wish I had a terminal illness and I envy those who have. That is the amount of pain and misery. Ppl told me at least you don’t have MS. ! As you said everyone case is different...... I learnt so soon not to think of what others say because our energy is limited ..... but chronic autoimmune has been painful and caused lots of grief
I've also heard that and it's an insensitive comment from people who don't know. So I have lupus, sjogrens, Raynauds, RA, and I Also had breast cancer. I still have people tell me just get up early and go for a walk to get ur muscles moving. I even had a dr tell me to do my makeup and I would feel better. Ugh, sometimes it's better to speak with others that r going thru the same thing just to avoid all the stupid comments. Hope u feel better 💓
Lupus and Cancer are pretty much the same disease. Because they cause the same issues, Such as SLE. You have to take Chemo and Cancer related drugs for both diseases.
Keshanna Teague yes!!! I took low dose chemo (methotrexate) at the highest RA/LUPUS dose my doctor would allow and people look at me weird whenever it’s mentioned. I’m proud of getting through that medium dose regimen and back down to a maintainable lupus level. We all suffer from terrible symptoms and terrible treatments. We should stand together not be compared!
I heard that sentence often. I really didn't want to hear that right after being diagnosed. Lupus is hard to live with. You basically ride a rollercoaster for the rest of your life.
I've survived cancer, but whilst going through several issues with management over time i've been at my work compared to being off sick, trying to get put on temporary disability etc, the consulant from the co actually said ' there are other people suffering from alot worse that what u have, but they're at work daily, wanting to work'. Times like that i felt so frustrated, wanting to cry out of helplessness. (Had severe raynaud's at the time & could not type fast as workef in contact centre, severe mctd symptoms, swelling of legs, feet, vasculitis, rheumatoid arthritis, depression & daily panic attacks...the list goes on). No matter what illness you suffer from, everyone is unique, their pain levels they can tolerate is different. You cannot really compare. But, although i've lost both my breasts having a double mastectomy; this i have now is far worse living with daily than my cancer ordeal. Western Cape, South Africa.
Reinett Bernardo thank you for sharing your story. I can’t believe that people say things like that. They have no idea what you or any individual is going through.
Thank you for your videos and the informations. I like to see you an your way to live with lupus. I also have lupus , diagnosed 2014, and sometimes it´s hard to live with it.... (sorry for my bad english) Best regards from Germany, Milka
BENLYSTA is not chemotherapy - it's a biologic therapy, delivered either through an IV infusion or as a self-injection. It works by reducing certain cells in your immune system that can make lupus active.
I totally agree. A lot also had to do with at my diagnosis it was narrowed down to lupus or leukemia. I also enjoy that risk of cancer. In fact, most all medications I’ve taken I’ve been monitored by having blood tests every 3 months to make sure I didn’t have cancer that might slide under the radar otherwise
I've 2 younger cousins with Lupus also. One has had a double mastectomy and has just had a procedure in her reproductive organs. The other had her bowel removed in an emergency, but a few years down the line she was thrilled to have reconstructive surgery. The majority of people aren't aware of SLE! If you say more common name Lupus, they may have a vague idea what it is. What they don't know, is there is so little treatment. My Plaquenil was stopped a few months back as I've been on it long enough. Since I came off it I can honestly say I've not noticed any deterioration. Steroids...I was on a high dosage for over a year, as I was being weaned off them my weight increased a little as dosage was reduced. By 3 this after I was totally off them i weighed twice my weight. It took over 3 years for it to very slowly to come off. At 4'10" I was like a barrel. I was losing weight, was put on steroids, doubled my weight which was so very painful to carry around with my aching body, certainly didn't help my Asthma and COPD, as carrying that extra weight totally exhausted me! It's very difficult to know what to do when no arthritic drugs agree with you. I doubt I will ever go on steroids again, take Fentanyl Patches for pain, just over 5ths to wean from 75mcg to nil after I was pretty sure the Fentanyl was making me worse! Yes, it was!! I've been off Fentanyl for 6 weeks, beginning to feel a bit human, but also still having withdrawals, Insomnia, muscle aches and pains, headaches. How I wish I'd done research before taking steroids and using Fentanyl. The problem is, when your in constant pain, chest problems caused by SLE attacking my lungs (I've never smoked, don't drink) I dread to think where I would be if I had! I've Osteoporosis, depression, I could go on.....there are so many ways this dastardly condition can effect each and every one unfortunate enough to get it, it's really tough! I've always been a healthy eater, don't eat meat of any sort, but try to eat best veg possible, was taking juices and smoothies before I was diagnosed, as I knew something was wrong! I eat spicy foods and curries as I love them and they tempt my taste buds. Any other hints or tips would be welcome. If they don't help me, they may help others. Possibly someone else's knowledge will help me...
I’m going so much lupus and now waiting on cancer results it’s very scary no help my grandson 14 he grow up and living his best life daughter suffering with depression my husband has his own health problem very alone
Love your vids girl. Your vulnerability shines through. Worry not, your channel’s growing as naturally as you are. I’ve been diagnosed with both. Lupus, cancer, more autoimmune whatever lol. They both, all, suck. I think people try to “measure” things against other things as a way of coping with distressing feelings. They can be distressed to hear you’re sick, so they say what they do to try to ease the news. Also, we’re not taught how to respond - because it’s not something we encounter every day. So we default to an icebreaker method - something that’s like comparing weather. Disease is an intimate subject and that alone contributes to the social awkwardness that surrounds a diagnosis. It’s a tough balance knowing when or what to reveal, and to whom. If we start by answering to ourselves the motivation behind our “revealing” our disease, it’s easier. I think keeping that motivation in mind (at the beginning of the “revealing” talk) will help the conversation unfold more easily. It can be hard to keep it in and it can be hard to let it out.
A Remedy Project you explained that perfectly. I reveal mine as a way to spread awareness and simply because lupus has shaped me into who I am. As much as I didn’t want it to be, it has become a huge part in my life. You understand how terrible both worlds can be and I can tell that you’re wise through your experience.
Thanks so much for being open and honest. I'm from the Island of Trinidad in the Caribbean, my wife was recently diagnosed with Lupus. It took a long time for our doctors to diagnose due to the fact that it mirrors rheumatoid arthritis. However my wife has lost all of her hair, and a lot of weight also. She spends 96% of her time in bed and is very weak. Has this been your experience as well? Because my wife was vibrant and happy and well and in the space of about 9 Months she was in hospital with the doctors running a barrage of tests
I have Sickle Cell and Lupus and for most of my life SC has always been compared to cancer. Because of the meds we take doctor will often say you can’t possibly have as much pain as a cancer patient (specifically bone cancer) which is patently the most painful cancer to doctors. Anyways I now have two invisible chronic diseases that are rare. Lol
Oh yes I have been told the same thing numerous amount of times people don’t understand that don’t go through it on a daily basis they don’t know the struggle they don’t know how he can be debilitating some days more than others even though it’s not cancer it’s something that the person struggles with it’s an autoimmune disease like you said and another thing to you is it’s different for everybody and do you know another thing to do is when people compare you to someone else I know that’s it oh well they have it to but it’s like I said different for everybody else the struggle of having pain every day the struggle of just trying to get the gumption to get out of bed in the morning to take a shower to get dressed it’s a task and yes someday are easier than others but people shouldn’t say you know oh I know someone else you’ll be fine that’s not the case you may look fine on the outside but on the inside you’re miserable you’re struggling and I just wish people were more aware we’re more educated on it because maybe just buy them knowing that maybe they could try to somehow understand it and understand that it’s not easy
Given that Lupus treatments include things such as Methotrexate (chemotherapy), high dose steroids such as Dexamethasone, and other often used cancer treatments such as Cyclophosphomide, as well as the fact that both conditions involve abnormal mutations of the blood cells, the conditions might as well as be 2 sides of the same coin. There is actually a theory out there that Lupus is caused by a mutation in red blood cells, the same mutation that causes some types of Leukemia. I wouldn't be surprised to find out in another decade or two that Lupus is a precursor disease state to some forms of cancer, particularly Lymphoma and Leukemia. What I will say is that while all diseases are important, the US government has far prioritized cancer research for decades while totally neglecting Lupus research. So, when you have cancer, at least you don't face a treatment desert where the only mirages are the faces of burned out and dumbfounded physicians. I hope to see, at LEAST, the discovery of the ROOT and causes of Lupus within my lifetime, because I have a feeling I won't live long enough to see an FDA approved cure.
Jokes on them, my lupus gave me thyroid cancer. Which of course leads to the infuriating comments of "well at least this is the most treatable cancer!" as if the thyroid gland doesn't effect every single system in your entire body... for the rest of my life I'll struggle.
Ignorance.....it’s everywhere. Your channel will grow with understanding people, yeah a few jerks like everywhere. We truly care about your channel because we are going through the same. Maybe not Lupus but similar autoimmune disorders.
Lupus is often called the disease with 1,000 symptoms. For real, look that up for those who do not believe that statement. I feel it's worse than Cancer. I'm allowed to feel that way. Treating Lupus is still in it's infancy. My kidneys have been in failure 2x. Nobody knows what to do for me. I have had friends on chemo watch me suffer worse than themselves and ask if I'm ok lol. What does that say? That spoke volumes to me. With lupus, they too use chemotherapy to attempt to send it into remission but we can only do that if we dont have any overlapping autoimmune diseases. Lupus also turns into other gnarly things the longer you have it, such as rheumatoid arthritis. Some are more fortunate than others. Every case is different too. It's a dumb/insensitive statement for anybody to make. I'm here to speak up for my fellow warriors and I'll happily take the hate for this. Do your worst lol, I have Lupus, I know what the feeling of being eaten alive is like. Everyone, stop saying that stuff it's ridiculous. Both diseases care nothing of what they do to the person it attacks. Bottom line.
Cancer it be cure and you might have remission but lupus no cure just chemotherapy treatment I’m going through they don’t know how I hate the pain I’m in every single day so my opinion cancer is bad but not worse disease like lupus my lupus caused me cancer so I think lupus is worse worse than cancer
As an RN, I’ve never heard anyone compare these two illnesses. I have lupus and I’ve never compared nor have had anyone compare these two diseases. This video shows lupus patients in a bad light. I went through RN school with lupus, and successfully had a good career with this disease, pain, fatigue and all. I’ve also seen horrendous illnesses and injuries much worse than my own disease so I don’t complain about my own condition. At age 27, I was finally diagnosed with a rare lupus, SLE CNS Vasculitis. I had a series of stokes and was in a coma from it. So yeah, its a bad diagnosis. But I don’t make videos like this feeling sorry for myself and making the public think I’m some sort of victim. This does nothing to help people with lupus empower themselves. Go out and help others with their own health issues and you’ll be grateful for the health that you DO have.
I used to do everything for everyone…a yes girl. As soon I was diagnosed with Lupus, and feeling unlike myself and getting sick often, I heard friends and family say I was too dramatic, that I didn’t look sick, it’s all in your head, etc. I am now in stage 3 kidney failure (not on dialysis), heart failure, severe neuropathy as well as a laundry list of other illnesses not to mention the severe fatigue. To the friends and family that have distanced themselves from me since I’m so dramatic and I’m no longer their do girl, I pray you never ever have to experience this disease.
I have been battling both Cancer and Lupus. The Cancer is SILENT. The Lupus lets me know of its presence EVERY day.
This is a great way to explain it. You have had one heck of a ride living with both. Keep up the fight Christie.
crazy parody mom I have lupus can I also have Cancer this is very scary just wait for me Results can I talk to can you share things with me
Yes, I've heard this comment also. It really hurts me. Not all people with cancer survive and that's heartbreaking, but on the flip side, a lot DO. And when they recover, that chapter is not closed, but the illness in itself is gone with treatment. Where as with lupus, you're sick forever and stuck... So yeah, I can totally relate by far. I have cns lupus with epilepsy, lupus nephritis, and sjgrones.... Thanks for the video. Praying for you ALL. ❤❤❤
I have heard the comment as well, heck I even thought to myself “at least it’s not cancer”. I was diagnosed this year with sle and I did not realize how hard some days were going to be. I ended up having nerve blocks in my head this year because I had a headache for a month. I am also for the first time in my life battling depression. I had trouble finding doctors in my small town that know what to do with a patient with lupus. My mom, dad, 2 aunts, 2 uncles and my grandma had cancer. We lost my grandma and my uncle so I have now seen both cancer and lupus and the bottom line is they BOTH SUCK but we need to keep in mind that each person is still fighting a battle and just ask if there is anything we can do to help.
I have RA and people don’t understand the difference between that and osteoarthritis. I have pretty much every lovely symptom that Lupus and RA share. I relate to so many of your videos. I hate when I express that something is challenging for me, or that I want to find a different career path because of my RA and people tell me, “it’s just arthritis.” I’m pretty polite about it but it can be difficult when you can’t get out of bed because your suddenly anemic, light headed, your chest hurts and your eyes and throat are so dry it hurts to open them. But it’s “just arthritis”
It is very difficult. Yesterday I could hardly do anything because of my joint pain, and with lupus the joint pain is not as damaging as RA. They wouldn't be saying that if they were living it.
I am diagnosed with Multiple Sclerosis and now Lupus.. so yeah, dealing with both at the same time..
Yep. Before I was diagnosed I had tests done to rule out cancer because my white blood cell count was so low (whole story on my channel if you’re interested) and when I tell people that they are SO relieved that it was “only” lupus
amanda green story of my life. I was going through a lymphoma diagnoses and once my lymph nodes were found not to be malignant everyone would say this to me. It’s so horrible and frustrating because I’m stuck with this for the rest of my life.
Khadija Khadija so frustrating.
I have Sjogrens and RA. People said that to me until I did get cancer...I am NED and most of my most serious health issues now are related to Sjogrens and RA. Very informative and thank you for discussing this.
Yes I have been told "at least its not cancer." I think the controversy arises because they don't get that cancer patients will either fight and win or fight and die, whereas lupus patients will fight and die or fight and fight and fight... (of course I know some people have multiple cancer battles). One is not worse than the other. It's not a competition. Both could be deadly depending on the situation. But by say "at least it's not..." they are minimizing our situation. It feels the same when someone says "but you don't look sick." Don't let the haters get you down. You are an amazing, encouraging, companionate person. If someone doesn't see that, they aren't paying attention.
I have heard this. It was when I was on low dose chemo for my lupus. I posted an update about it on my FB and my mom’s cousin seemed all concern about why I was on chemo. I explained to which he replied “oh well thank goodness it isn’t serious like cancer”. 🙄
Thank you for the information on Lupus, was diagnosed last December, being told that you have cancer for me was devastating at 26 with a new born, another baby of 2years and another at 5years was hard, I've had my share and then some over the years, now 64 and coping daily with Lupus is very difficult but have to do what I have to, to survive because everyday is a new day, thank you again for your videos, I'm praying for all, God Bless
I have heard this for 15 years! Don’t worry about the haters. You are tremendous !🙋❤️
I am 56 years old and was diagnosed with Lupus when I was in my 20s. When I moved from California to Louisiana in 2010 I have had doctors continue to tell me that I do not have Lupus and that I have Sjogren’s only. The last rheumatologist I talked to 3 years ago told me that it’s not Lupus unless you have cancer. I never heard that before and felt angry that he would tell me that. I stopped trying to get doctors to treat me for lupus. In August I was diagnosed with breast cancer. The first thing I thought of was way did that doctor tell me that? I should not have stopped taking Hydroxychloroquine.
I Have Sjogren's and it pisses me off when people are like never heard of it and don't know anything it can do, and it's wrecking havoc on my body the last month so badly, and so not easy to live with, so over what ppl say
Prtygrl44 also have sjogrens Definitely unknown
Sjogrens is a tough one too. I know I talk a lot about lupus on here, but the dryness and salivary issues from my Sjogrens really affect my day to day quality of living.
Live Hope Lupus yes...I also have systemic issues...I just keep moving!
I have it also and it's horrible especially combining the symptoms of lupus sle... it's a daily hell to live in. People really don't understand
Most people are really supportive to me, though some people can make comments implying it's not 'that bad'. When you just got out of the biggest flare have just been diagnosed, you don't want people to compare you to people who might have it worse. It just doesn't mean that struggling with Lupus is not 'that bad' just because there are people out there that struggle with diseases on another level. I totally relate to what you're saying..
I'm struggling with Sjogrens, Lupus and Raynauds and have been officially diagnosed since january. Loving your channel and videos!
I have an immunodeficiency and I'll be on immunoglobulin replacement the rest of my life. I also have UCTD and MGUS from the immunodeficiency. One of the doctors that manages my condition is a hematologist. Every appointment he reminds me that it's not cancer, and then kind of chuckles. I've never been a "woe is me" kind of patient. It was upsetting to know I'd be on a time consuming, painful, expensive infusion for the rest of my life. I was relieved to get a diagnosis and the fact that there's treatment, yet that "well it's not cancer" comment is like saying the person has nothing to complain about.
Yes, my eye doctor that was screening me for Plaquenil just the other day said, “at least you don’t have cancer!”
I have a couple of autoimmune diseases and a lot of people have said this to me. I find that people don't really have that firm of an understanding of what cancer even is and then obviously no understanding of my diseases or what happens when you have it. It is incredibly upsetting to me because it's as if my diseases and sufferings don't matter since my diseases don't fall into this specific class of disease, as if they know what they're even saying. And I am sure it get's frustrating to cancer patients to hear "at least it's not cancer" all the time to cheer people up or invalidate others, people will use my being sick to tell people they ~have no excuse~ which is so infuriating in many ways.
I just want to say thank you for everything you do. When I was diagnosed three years ago I discovered your videos. I was terrified. I thought you were so brave and you inspired me. Thank you for sharing your journey and your experiences and getting the word out there. And thank your for taking time out of your day to respond to us. This video just makes me grateful for a lupus warrior like you.
Thank you for all the information you give in these videos! I’m going through kidney problems due to my lupus not to mention open heart surgery and 3 strokes... hugs 💜
This is one of the most annoying things I had to deal with. My grandma doesn't 'get' lupus. After she saw me loosing lots of weight, beying extremely sick etc. She just decided that my doctors came up with this lupus thing and that in reality I have some sort of cancer. It didn't help even reading articles about lupus to her or taking her to my appointments. Unfortunately lupus is not a 'trendy' illness to have
Yep. I've heard that phrase many times. I try to be understanding because maybe they don't know what else to say, but it still does get frustrating/upsetting because they make it seem as if our disease isn't difficult.
When I m in significant flare of fibro I wish I had a terminal illness and I envy those who have. That is the amount of pain and misery. Ppl told me at least you don’t have MS. ! As you said everyone case is different...... I learnt so soon not to think of what others say because our energy is limited ..... but chronic autoimmune has been painful and caused lots of grief
I've also heard that and it's an insensitive comment from people who don't know. So I have lupus, sjogrens, Raynauds, RA, and I Also had breast cancer. I still have people tell me just get up early and go for a walk to get ur muscles moving. I even had a dr tell me to do my makeup and I would feel better. Ugh, sometimes it's better to speak with others that r going thru the same thing just to avoid all the stupid comments. Hope u feel better 💓
Lupus and Cancer are pretty much the same disease. Because they cause the same issues, Such as SLE. You have to take Chemo and Cancer related drugs for both diseases.
Keshanna Teague yes!!! I took low dose chemo (methotrexate) at the highest RA/LUPUS dose my doctor would allow and people look at me weird whenever it’s mentioned. I’m proud of getting through that medium dose regimen and back down to a maintainable lupus level. We all suffer from terrible symptoms and terrible treatments. We should stand together not be compared!
I heard that sentence often. I really didn't want to hear that right after being diagnosed. Lupus is hard to live with. You basically ride a rollercoaster for the rest of your life.
I heard this when I was crying because of my muscles and whole back was hurting to a point where I crying ( it takes a lot of pain for me to cry.)
I've survived cancer, but whilst going through several issues with management over time i've been at my work compared to being off sick, trying to get put on temporary disability etc, the consulant from the co actually said ' there are other people suffering from alot worse that what u have, but they're at work daily, wanting to work'. Times like that i felt so frustrated, wanting to cry out of helplessness. (Had severe raynaud's at the time & could not type fast as workef in contact centre, severe mctd symptoms, swelling of legs, feet, vasculitis, rheumatoid arthritis, depression & daily panic attacks...the list goes on). No matter what illness you suffer from, everyone is unique, their pain levels they can tolerate is different. You cannot really compare. But, although i've lost both my breasts having a double mastectomy; this i have now is far worse living with daily than my cancer ordeal. Western Cape, South Africa.
Reinett Bernardo thank you for sharing your story. I can’t believe that people say things like that. They have no idea what you or any individual is going through.
When I was still getting diagnosed and they were testing for cancer I heard that comment all the time.
Thank you for your videos and the informations. I like to see you an your way to live with lupus. I also have lupus , diagnosed 2014, and sometimes it´s hard to live with it.... (sorry for my bad english)
Best regards from Germany,
Milka
Yes heard it so many times. At least it's not cancer. It's frustrating
I'm on the chemotherapy Benlysta for my Lupus. Almost 20 years of lupus.
It's a hard to manage disease. Let's hope that a cure is in our future.
BENLYSTA is not chemotherapy - it's a biologic therapy, delivered either through an IV infusion or as a self-injection. It works by reducing certain cells in your immune system that can make lupus active.
I totally agree. A lot also had to do with at my diagnosis it was narrowed down to lupus or leukemia. I also enjoy that risk of cancer. In fact, most all medications I’ve taken I’ve been monitored by having blood tests every 3 months to make sure I didn’t have cancer that might slide under the radar otherwise
Shoot! Enjoy that *YOU MENTIONED* that risk of cancer 🤦🏻♀️
I fighting lupus over 11years n now I have stage 4 renal cancer terminal ill
I've 2 younger cousins with Lupus also. One has had a double mastectomy and has just had a procedure in her reproductive organs. The other had her bowel removed in an emergency, but a few years down the line she was thrilled to have reconstructive surgery. The majority of people aren't aware of SLE! If you say more common name Lupus, they may have a vague idea what it is. What they don't know, is there is so little treatment. My Plaquenil was stopped a few months back as I've been on it long enough. Since I came off it I can honestly say I've not noticed any deterioration. Steroids...I was on a high dosage for over a year, as I was being weaned off them my weight increased a little as dosage was reduced. By 3 this after I was totally off them i weighed twice my weight. It took over 3 years for it to very slowly to come off. At 4'10" I was like a barrel. I was losing weight, was put on steroids, doubled my weight which was so very painful to carry around with my aching body, certainly didn't help my Asthma and COPD, as carrying that extra weight totally exhausted me! It's very difficult to know what to do when no arthritic drugs agree with you. I doubt I will ever go on steroids again, take Fentanyl Patches for pain, just over 5ths to wean from 75mcg to nil after I was pretty sure the Fentanyl was making me worse! Yes, it was!! I've been off Fentanyl for 6 weeks, beginning to feel a bit human, but also still having withdrawals, Insomnia, muscle aches and pains, headaches. How I wish I'd done research before taking steroids and using Fentanyl. The problem is, when your in constant pain, chest problems caused by SLE attacking my lungs (I've never smoked, don't drink) I dread to think where I would be if I had! I've Osteoporosis, depression, I could go on.....there are so many ways this dastardly condition can effect each and every one unfortunate enough to get it, it's really tough! I've always been a healthy eater, don't eat meat of any sort, but try to eat best veg possible, was taking juices and smoothies before I was diagnosed, as I knew something was wrong! I eat spicy foods and curries as I love them and they tempt my taste buds.
Any other hints or tips would be welcome. If they don't help me, they may help others. Possibly someone else's knowledge will help me...
I’m going so much lupus and now waiting on cancer results it’s very scary no help my grandson 14 he grow up and living his best life daughter suffering with depression my husband has his own health problem very alone
I've said it to myself. I understand completely what you are saying.
Keep sharing, you are helping so many people with autoimmune diseases. And Thank you so much!!
I’ve gotten this comment as well... it’s hurtful and frustrating
Love your vids girl. Your vulnerability shines through. Worry not, your channel’s growing as naturally as you are.
I’ve been diagnosed with both. Lupus, cancer, more autoimmune whatever lol.
They both, all, suck.
I think people try to “measure” things against other things as a way of coping with distressing feelings.
They can be distressed to hear you’re sick, so they say what they do to try to ease the news.
Also, we’re not taught how to respond - because it’s not something we encounter every day. So we default to an icebreaker method - something that’s like comparing weather.
Disease is an intimate subject and that alone contributes to the social awkwardness that surrounds a diagnosis.
It’s a tough balance knowing when or what to reveal, and to whom.
If we start by answering to ourselves the motivation behind our “revealing” our disease, it’s easier.
I think keeping that motivation in mind (at the beginning of the “revealing” talk) will help the conversation unfold more easily.
It can be hard to keep it in and it can be hard to let it out.
A Remedy Project you explained that perfectly. I reveal mine as a way to spread awareness and simply because lupus has shaped me into who I am. As much as I didn’t want it to be, it has become a huge part in my life. You understand how terrible both worlds can be and I can tell that you’re wise through your experience.
Thanks so much for being open and honest. I'm from the Island of Trinidad in the Caribbean, my wife was recently diagnosed with Lupus. It took a long time for our doctors to diagnose due to the fact that it mirrors rheumatoid arthritis. However my wife has lost all of her hair, and a lot of weight also. She spends 96% of her time in bed and is very weak. Has this been your experience as well? Because my wife was vibrant and happy and well and in the space of about 9 Months she was in hospital with the doctors running a barrage of tests
They both are life threatening. It aggravates me how ignorant people are
Oh gosh. This is why we need the awareness.
Live Hope Lupus yes
I have Sickle Cell and Lupus and for most of my life SC has always been compared to cancer. Because of the meds we take doctor will often say you can’t possibly have as much pain as a cancer patient (specifically bone cancer) which is patently the most painful cancer to doctors. Anyways I now have two invisible chronic diseases that are rare. Lol
I have heard that comment so many times.
I have been told this too
I have been told that by alot of people
I have SLE LUPUS And cancer it's not fun the lupus makes it harder.
Oh yes I have been told the same thing numerous amount of times people don’t understand that don’t go through it on a daily basis they don’t know the struggle they don’t know how he can be debilitating some days more than others even though it’s not cancer it’s something that the person struggles with it’s an autoimmune disease like you said and another thing to you is it’s different for everybody and do you know another thing to do is when people compare you to someone else I know that’s it oh well they have it to but it’s like I said different for everybody else the struggle of having pain every day the struggle of just trying to get the gumption to get out of bed in the morning to take a shower to get dressed it’s a task and yes someday are easier than others but people shouldn’t say you know oh I know someone else you’ll be fine that’s not the case you may look fine on the outside but on the inside you’re miserable you’re struggling and I just wish people were more aware we’re more educated on it because maybe just buy them knowing that maybe they could try to somehow understand it and understand that it’s not easy
The worst part is you live in fear everyday almost all time
Given that Lupus treatments include things such as Methotrexate (chemotherapy), high dose steroids such as Dexamethasone, and other often used cancer treatments such as Cyclophosphomide, as well as the fact that both conditions involve abnormal mutations of the blood cells, the conditions might as well as be 2 sides of the same coin. There is actually a theory out there that Lupus is caused by a mutation in red blood cells, the same mutation that causes some types of Leukemia. I wouldn't be surprised to find out in another decade or two that Lupus is a precursor disease state to some forms of cancer, particularly Lymphoma and Leukemia. What I will say is that while all diseases are important, the US government has far prioritized cancer research for decades while totally neglecting Lupus research. So, when you have cancer, at least you don't face a treatment desert where the only mirages are the faces of burned out and dumbfounded physicians. I hope to see, at LEAST, the discovery of the ROOT and causes of Lupus within my lifetime, because I have a feeling I won't live long enough to see an FDA approved cure.
Jokes on them, my lupus gave me thyroid cancer. Which of course leads to the infuriating comments of "well at least this is the most treatable cancer!" as if the thyroid gland doesn't effect every single system in your entire body... for the rest of my life I'll struggle.
yes i have heard that :(
It was the 1st thing i heard.
Ignorance.....it’s everywhere. Your channel will grow with understanding people, yeah a few jerks like everywhere. We truly care about your channel because we are going through the same. Maybe not Lupus but similar autoimmune disorders.
Lupus is often called the disease with 1,000 symptoms. For real, look that up for those who do not believe that statement. I feel it's worse than Cancer. I'm allowed to feel that way. Treating Lupus is still in it's infancy. My kidneys have been in failure 2x. Nobody knows what to do for me. I have had friends on chemo watch me suffer worse than themselves and ask if I'm ok lol. What does that say? That spoke volumes to me. With lupus, they too use chemotherapy to attempt to send it into remission but we can only do that if we dont have any overlapping autoimmune diseases. Lupus also turns into other gnarly things the longer you have it, such as rheumatoid arthritis. Some are more fortunate than others. Every case is different too. It's a dumb/insensitive statement for anybody to make. I'm here to speak up for my fellow warriors and I'll happily take the hate for this. Do your worst lol, I have Lupus, I know what the feeling of being eaten alive is like. Everyone, stop saying that stuff it's ridiculous. Both diseases care nothing of what they do to the person it attacks. Bottom line.
Cancer it be cure and you might have remission but lupus no cure just chemotherapy treatment I’m going through they don’t know how I hate the pain I’m in every single day so my opinion cancer is bad but not worse disease like lupus my lupus caused me cancer so I think lupus is worse worse than cancer
Now imagine being a guy with Lupus, a "womens disease". People say stupid things.
As an RN, I’ve never heard anyone compare these two illnesses. I have lupus and I’ve never compared nor have had anyone compare these two diseases. This video shows lupus patients in a bad light. I went through RN school with lupus, and successfully had a good career with this disease, pain, fatigue and all. I’ve also seen horrendous illnesses and injuries much worse than my own disease so I don’t complain about my own condition. At age 27, I was finally diagnosed with a rare lupus, SLE CNS Vasculitis. I had a series of stokes and was in a coma from it. So yeah, its a bad diagnosis. But I don’t make videos like this feeling sorry for myself and making the public think I’m some sort of victim. This does nothing to help people with lupus empower themselves. Go out and help others with their own health issues and you’ll be grateful for the health that you DO have.