12 Myths About Autoimmune Disease That Make It Even Harder to Live With
Autoimmune diseases, which occur when the immune system mistakenly attacks its own body, come in a variety of forms, each affecting different organs and bodily systems and producing a unique array of symptoms. There are more than 100 identified autoimmune diseases, such as lupus, rheumatoid arthritis, Crohn’s disease, type 1 diabetes, multiple sclerosis and celiac disease.
Although autoimmune diseases are common, affecting approximately 23.5 million Americans, many people still don’t understand the reality of autoimmune conditions and what it’s like to live with them, and this lack of understanding can unfortunately give way to misconceptions or assumptions that are not just inaccurate, but hurtful. Living with a lifelong disease can already be incredibly difficult to manage. But add on the stigmas and misunderstandings surrounding the condition, and navigating life as an autoimmune warrior can become even tougher.
We wanted to correct some of the misconceptions surrounding autoimmune disease, so we asked our Mighty community to share the “myths” they’ve heard that make it even harder to live with the condition. Breaking down these stigmas is not only an important part of promoting general understanding and awareness, but could eventually lead to more research and better treatment options for those with autoimmune diseases.
Myth #1: You will eventually “get better.”
“That we ‘get well’ – like a cold, flu or skinned knee. I’ve stopped trying to explain.” – Amy W.
“I’m so tired of hearing the ‘hope you feel betters!’ This stuff is chronic. I go through good periods but I don’t know how many times I have to explain that it never just goes away!” – Candice P.
“I have lupus and I think many people assume it will go away like a cold. They don’t understand that people can die from the effects of it, like the damage it can do to the heart, lungs or other major organ systems. I had a doctor say, ‘well, at least it’s not cancer.’ But it attacks the immune system, and the meds for lupus are immune suppressants, making us more likely to not only develop cancer, but have heart attacks, strokes and more. It affects every single aspect of life and body. And will never be cured.” – Tracy B.S.
Reality: Currently, there is no cure for autoimmune diseases. Although people may experience periods of remission from their symptoms, take medication that lessens their symptoms, and/or have better days than others, their disease will not “go away.”
Myth #2: Having an autoimmune disease means you don’t have an immune system.
“I have an immune system, it just doesn’t know what it’s doing. It attacks me instead of germs. So many times people have said they thought I had almost no immune system – that’s what my medicine does to stop the disease. IRL my immune system is here, just malfunctions a lot.” – Kristin M.K.
Reality: With autoimmune disease, the problem is not that you lack an immune system; the problem is that your immune system is attacking your own body instead of foreign invaders. Many of those with autoimmune disease may need manage their symptoms by taking immunosuppressant medication, which would suppress the immune system, but not get rid of it.
Myth #3: If you look OK, you must be feeling better!
“Just because we look OK, does not mean we are OK! We are the best actors as we don’t want to be constantly judged as the sick person who complains! We put on a fake smile but we [may be] miserable inside. Learn to ask how people are and really listen when they answer.” – Dana W.
“Just because you can’t see it, doesn’t mean it’s not real! I have RA [rheumatoid arthritis] and you would never know from looking at me, especially since I’m only 20. But that doesn’t mean I don’t experience the symptoms every day.” – Kerriann B.
“It is a common misconception about autoimmune disease that seeing someone in a still photograph smiling and enjoying a physical activity must mean they are feeling better, as though they are recovered from a bad flu and able to function in the ‘normal’ world as someone who is healthy. What I wish people knew instead was that scheduling activities actually gives me anxiety because I have no idea how I will feel or how functional I will be at any given future time. I am so grateful for the times when I am able to do something physical because I don’t know how many of those times I have left. I live in a world of unpredictability and there is only so much I can do to minimize and cope with my symptoms. Instead of judgment or misunderstanding, all I want is trust and support.” – Jackie R.
Reality: Autoimmune disease may often be “invisible.” A person’s appearance doesn’t necessarily reflect their health or how they feel.
Myth #4: Your illness will go away if you lose weight.
“That losing weight will make it all go away… when in fact my weight is the way it is because I live with these diseases (and have to take some medications).” – Alane P.
Reality: Losing weight is not a “cure” for autoimmune disease. It may help some feel better, but for others it can exacerbate symptoms of illness or cause additional health issues. Always talk to your doctor before beginning any new weight loss/gain regimens.
Myth #5: Being on medication or treatment means your symptoms are totally under control.
“There is this idea that autoimmune diseases are like other diseases where we can get treatment and get, or at least seem to get, better, see our symptoms subside or at least be controlled. Even with treatment our conditions can flare at any time and even our small, everyday symptoms are debilitating.” – Gwendolyn A.
“That the medication seen on TV works for everyone and if you take it you are controlled or ‘cured.’ Sadly, most autoimmune disease patients have to work at finding the right medication or medications to control symptoms and even on medication a patient still has flares. For some patients, they have tried every medication on the market and still can’t find something to control their disease.” – Elaine W.
“Medications aren’t a magic cure. Yes, I had treatment yesterday. No, that doesn’t mean I should be feeling 100 percent better today.” – Elizabeth P.
Reality: While medication/treatment can help reduce pain or symptoms and may even help some achieve remission, it is not a cure. Many may still experience flare-ups of symptoms while on medication, or go through multiple trial and error processes to find a combination of treatments that works best for them.
Myth #6: If you’re under a certain age, you’re “too young” to have an autoimmune disease, but if you’re over a certain age, your symptoms are “just a part of getting older.”
“‘But you’re so young…’ I’ve heard that for decades. Now that I’m getting closer to 40 I suspect people will soon assume, ‘Well, it’s just part of getting older.’ Either way, it’s that sense of feeling dismissed, which is really hard. I wish people knew that autoimmune conditions of all kinds happen at all ages, and that it is a constant fight for many to be acknowledged by doctors, family, friends, employers, etc.” – Angela Z.W.
“That just because I’m young it can’t be that bad. No one should assume what someone else is going through.” – Sara K.W.
Reality: Autoimmune disease can affect people of any age. There’s no such thing as being “too young,” and the effects your disease can have on you as you age are very different than the natural aging process.
Myth #7: Staying at home all day is “fun” and “relaxing.”
“That my days are filled with binge-watching TV, doing whatever I want and relaxing. When in reality most of my days are me sick, in pain, exhausted and crying. I think people think when you don’t work because of autoimmune disease you are lazy or living this life of fun.” – Laura B.
Reality: If a person with autoimmune disease is home sick because of their condition, it’s not a “vacation” and they’re not being “lazy.” They’re home because they’re dealing with often-debilitating symptoms that can make everyday tasks feel just about impossible.
Myth #8: You must not be that sick if you’re able to ____.
“‘You must not be that sick if you can do…’ There are some activities I choose to do that will affect my body. The fact that once in a while I do an activity that I know will cause extra pain doesn’t mean I’m not in pain every single day of my existence. There are some experiences that are worth it, and taking control by choosing that pain helps me deal with the daily pain I can’t control. I didn’t start doing Tough Mudder until after my diagnosis.” – Stacie B.
“‘If you’re sick, why [do] you have makeup on your face? You’re supposed to be sick in bed.’ Like… OK, I’m gonna live in bed with my pajamas every day.” – Adele P.G.
Reality: Despite the often-debilitating symptoms, people with autoimmune disease still have lives and responsibilities. Just because you see them out running errands or getting coffee with a friend doesn’t mean they’re not still dealing with the symptoms and side effects of their illness.
Myth #9: You have a disease, so you must be contagious.
“People seem to think that ‘disease’ means it’s contagious.” – Sophie R.
“I’m not contagious. Like you can be in the same room with me and not catch it.” – Carrie M.
Reality: Autoimmune diseases are not contagious and cannot be spread like viruses or bacteria.
Myth #10: If you just [insert lifestyle change here], it will “cure” your disease!
“That certain foods or vitamins will somehow cure my disease. Most autoimmune diseases don’t have a cure. Telling people to take their products or to just exercise comes off as judgmental and blame.” – Jenny W.S.
“That working out and eating healthier will make lupus all better and cure you. No ma’am, no ma’am! Once you have lupus you’re stuck with it for life. Even when I do eat healthier I throw it back up. Some days from lupus my meds will make me so sick that I’m afraid to go exercise by myself because I may pass out or hurt myself where nobody can help me. Some days I just don’t have the energy to work out or even cook. I’d rather just fix a bowl of noodles and go to sleep. The reason why I gained weight isn’t due to me over-eating, it’s due to my meds because I really don’t eat a lot at all.” – Jalecia J.
“That exercise will fix everything. Yes, in some situations it may help but it is not something that is always possible to do/maintain or even enjoy.” – Bec H.
“That changing your diet will cure you. I’d be rich if I had a penny for every time someone told me I’d ‘feel better’ if I’d only change my diet and/or get out of my house and do something. It’s not simple for me to just get up and go, and some days, it hurts so bad I can’t even walk to the bathroom or sit up in bed without crying.” – Melissa N.
Reality: While some people may find that altering their diet or exercise regimen helps them cope with certain symptoms, autoimmune diseases cannot be cured or “fixed” with lifestyle changes.
Myth #11: You can’t be super sick today if you were just feeling great yesterday.
“[People think] that because I work out and stay active I must be ‘fine’… so whenever people see me out, and then I cancel plans last minute they often say, ‘But she was just at the gym yesterday, or I just saw her at Walmart last night and she seemed fine.’ But they don’t understand a flare can literally strike overnight and I can wake up in pain/discomfort.” – Vanessa A.C.
“‘You looked fine this morning (or yesterday) – how can you possibly be sick all [of] the sudden?’ That’s my favorite.” – Rosie N.
Reality: Autoimmune diseases can be highly unpredictable and may often fluctuate day-to-day. A person may feel pretty decent one day, then wake up in a giant flare-up the next morning. That doesn’t mean they are “faking it.”
Myth #12: Everyone with the same disease experiences similar symptoms and health journeys.
“[People think] lupus patients will have the same outcomes. This isn’t true at all. It is completely different for each person. I wish people would stop comparing me to others they know who have this disease.” – Bianca P.M.
“When they think what works for their aunt’s cousin’s girlfriend’s mother will work for everyone. Autoimmune disease affects everyone differently. Not every symptom is exactly the same, nor is any one treatment effective for everyone.” – Stacie B.
“[I wish] people would not only do their research on invisible illnesses, but understand that it doesn’t affect two people the same. Learn the illnesses and the side effects. For the meds as well. It’s a struggle and we will not ‘get better’ – we just get through another day.” – Heather B.
Reality: Just as every person is unique, so is their experience with autoimmune disease. Different people may have different symptoms, different comorbidities and may respond differently to the challenges of their illness. Every person’s experience is valid.
Getty Image by Mila_1989