The Mighty Logo

17 of the Worst Side Effects of Autoimmune Disease – and How to Cope

The most helpful emails in health
Browse our free newsletters

With more than 100 unique autoimmune diseases having been identified, there’s no question that they can produce a very wide array of symptoms. But no matter which disease you have, which systems/organs are affected, and which symptoms you experience, these chronic, incurable diseases can result in some common side effects among autoimmune warriors.

While the symptoms of autoimmune disease can certainly be serious and debilitating, sometimes, the side effects can be just as challenging to cope with.

That’s why we asked our Mighty community to share one of the worst side effects of autoimmune disease they experience – and how to cope with it. If you struggle with the following as well, check out the strategies and reminders that help our community on difficult days, and remember that you’re not alone in dealing with the challenges of autoimmune disease.

Here’s what our community shared with us:

1. Fatigue

The bone-crushing fatigue. I could deal with the severe pain and lack of mobility, but when I began getting fatigue that made me unable to do basic daily tasks, it took away all hope of a career or productive life, which was so important to me.” – Alyson A.K.

Fatigue! I’m a mom/stepmom of six. It’s so difficult to be all the things I need to be for everyone when I feel like I have the flu for weeks at a time. And it’s so hard to explain to someone without an autoimmune disease.” – Dana C.

Coping tips:

I am always exhausted. I can get a full eight hours of sleep and still be exhausted. I usually just keep getting up and walking around throughout the day to get my mind to wake up as well.” – Kari D.

IBD-related fatigue. Pacing is key. It can take an awful lot of practice to get right, and even then, some days are worse than others and the minimal stuff you intended to do, doesn’t get done. The important thing is not to scold yourself. You’re doing your best, and that’s all you can ever do. It also means that you sometimes have to do the things you want to do, knowing it will mean a few days of complete rest after, because life still needs to be enjoyed.” – Sahara F.B.

Helpful stories:

2. Mood Swings

The mood swings. They’re brought on by the constant struggle of dealing with pain, memory issues, losing my independence, feeling like a failure, having to rely on an endless supply of meds to function at some level? I never mean to, but sometimes I can be downright nasty to be around. Usually when I’m in a great deal of pain or having to fuss with insurance/doctors’ offices over stuff. I get overwhelmed and everything gets away from me until I start to snap at people close to me. I get frustrated and slam a door or throw something. It doesn’t happen often, but when it does I feel really bad. I feel like I know better, but I just can’t help myself after so much pressure or too long in pain.” – Katherin M.

Coping tips:

“You try being a total peach each time you are in pain. The truth is: Arthritis hurts. It’s draining, it’s exhausting and we’ve probably been fighting this battle for a long time, or we might be brand new at it and going through emotions we don’t understand yet. It’s hard to always stay positive. It’s also up to us to apologize for the mistakes we make due to our illness.” – Eileen Davidson

“While life may seem easier when emotions are left out of the mix, they’re not something we can avoid forever. They will catch up with us, no matter how OK we think we are. It’s not a bad thing. Emotions can be scary, but only if we choose to run from them. They need to be embraced and dealt with… We need to process them. Everyone does this in their own way: it may be through talking about it or writing about it or any other form of release. Regardless, they need to be processed. It must be understood. Why are we feeling that emotion? Is there something we can do to ease the cause? If not, what do we do about it?” – Aneeqah Meyer

Related stories:

3. Losing the Ability to Do Things You Could Once Do

The pain and struggle of wanting to do things the way I used to. I’d love to cook healthier, however I’m sick and exhausted all the time. So, it’s usually a quick and easy meal. This equals not so healthy. It hurts to chop veggies now, so I buy as many pre-cuts as possible. People look at me as though I’m being lazy and wasting money. If only they knew the struggles! I try so hard, but I always seem to feel as though I’m missing the mark.” – Tina C.F.

Coping tips:

“I know that year after year, I will lose my ability to walk longer distances and stand for long periods of time… I have to accept my failure. However, in doing so, I will also be accepting myself. My continually evolving physical self. And as a chronically ill person, that is a necessary process. Each and every time my disease progresses or I finally have to give in to another loss of abilities, I have to accept my new self. And that’s OK. Because it’s actually a process everyone should go through as they age.” – Sharilynn Battaglia

“One word I will never throw out of my vocabulary is can’t. And it’s taken me years to realize that isn’t a bad thing. Sometimes you just can’t do some things. To others with any sort of illness, it’s OK. We are the way we are, and society can’t change us. Some people may try to brush it off, but know that there are others out there who know your struggle. So don’t be afraid to use can’t if you truly can’t do something… Don’t let anyone else dictate what you can and can’t do. You know your body, you decide.” – Kailey Dyan

Related stories:

4. Unpredictability/Uncertainty

Never knowing what’s next. Not knowing how sore you’re going to be, or how fatigued. Is the late night you had two days ago going to make the loss of sensation worse tomorrow? Is that pain in my foot a symptom or something else?” – Tina R.

Coping tips:

“The problem with feeling good is that when the inevitable bad days come, it breaks your heart a little… How do you learn to deal with it? The best I can do is try to face it with at least a modicum of decency. Take a deep breath and do the best I can. Do I really have any other choice? The one thing I do feel quite certain of is that it is OK to feel this way. I am strong. I will fight. I will make the best of this frustrating and depressing life change. But when I sit down at the end of the day and feel hopeless, it is OK. When the tears roll down my cheeks because I hate this and I’m lonely, it is OK.” – Kristen Steele

Related stories:

5. Constant Infections

Higher infection risks, including MRSA in my spine thanks to immunosuppressive medications to treat the disease.” – Megan S.

“Being on immunosuppressants means I am constantly picking up infections, the common cold, etc. Not only that, but even with meds/ointments/antibiotics, my body struggles to fight it off. This, in turn, wears me and makes it harder to manage all my ‘regular’ symptoms. It’s a vicious cycle.” – Paige W.

Helpful stories:

6. When People Don’t Understand Your Illness

The most difficult thing to deal with is others. Most friends and family are caring and only offering their advice because there is really nothing else they can do but I can’t stomach one more lecture on so and so’s sister who says she is ‘cured’ from a chronic illness because of [fill in the blank], or the people who ask ‘you aren’t better yet?’ as if I have failed in my quest to get better. Chronic illnesses, autoimmune or not, aren’t able to be cured (yet!). So many don’t understand that!” – Bethany T.

All the people letting you know of all the people they’ve heard of being ‘cured’ of their disease and I would be too if I just tried this or that. Most of all people not understanding how hard it is just to get out of bed most days.” – Chelsea P.

Coping tips:

“We can’t be burdened by the need to explain ourselves to everyone who doesn’t already understand, but we can keep moving forward… For me, this means holding my head up, and walking past someone who seems to be looking at me askance as I get out of my car in a disabled parking spot, or who wonders why I’ve brought my dog into the grocery store – even though he is clearly marked as a service dog, and bravely canceling appointments and activities I simply don’t feel I can do on any given day. The people who know us understand – at least to some extent – and the other people’s opinions simply don’t matter.” – Cyd O.

Related stories:

7. Brain Fog

Not being able to think clearly and word aphasia. I used to say ‘at least I have my brain.’ I can no longer say that. I cope with this by taking notes on everything, and handwriting as much as possible. Calendars, recaps of what I’ve done, software programs for budget and tasks.” – Autumn M.

Brain fog is the worst! I had a job where attention to detail is important, now I can no longer do that job because of my autoimmune disease. Imagine doing what you love, then not being able to because your body won’t let you!” – Preference R.

Helpful stories:

8. Weight Fluctuations

The massive weight fluctuations. I constantly have to get new clothes because week to week my body changes. I’m so sick of having people comment on my weight or give me ‘helpful’ advice on how to lose weight.” – Jolene D.

Coping tips:

“To those of you struggling with weight fluctuations due to chronic illness, I get it. It is far from easy… But I want you to know you are not alone, and you are so much more than your body. It can be hard to see things that way, and I work on seeing it from that point of view each and every day. But you don’t owe anyone an explanation. You do not owe anyone an apology. You do not owe anyone anything. Your weight is your business, and so much of the time it is out of our control. Keep trying. Keep fighting. And know you are beautiful no matter what.” – Claire Cannon

Related stories:

9. Loss of Identity

Loss of perception of self. I knew who I was I knew exactly what I was good at. I had the right degree in the perfect field and then one day none of it was possible anymore. All my hard work was for nothing . My degree serves as a memory. Because of multiple sclerosis I lost who I was but I was forced to discover the new me. Perception is everything and it took my autoimmune disorder to help me truly understand that concept.” – Kaylle M.

Coping tips:

“Last night I was upset realizing I had lost that old person. I can no longer remember living without pain. I can no longer remember the full joy and freedom of cheering. I can no longer remember what it is like to be healthy. And yet, I came out the other side, and so can you. It will be a process, but I promise you can redefine yourself. Educate yourself on your illness, get the care you need and learn to advocate for yourself. Write about your experiences, share with the world and find what makes you truly happy. Remember the old you, but also embrace the new.” – Kaitlyn Brennan

Related stories:

10. Parenting With an Illness

Having a toddler that already helps me because I cannot always help myself. I don’t want her to end up being my sort of servant. I want for her to have a fun childhood. I don’t want her to have a mommy that can’t take her to the park or museum or other fun activity because I hurt too much. But that’s how it’s looking and it hurts me to think about that.” – Linsey M.

Coping tips:

“A mother will do anything to protect her children from pain, emotional and physical, and it feels like I am hurting them when I have to opt out of activities or when I have to ask them to stop touching me because it’s too painful. What kind of a mother does that? But then I remember I have raised intelligent, compassionate, loving and resilient little humans who get everything from me that I can give. Between their father and me, they get all the love they need. When they’re adults, they’re not going to remember mom missing out on nature walks, but they will remember how loved they were and are. I am not damaging them, but my guilt is damaging me, and I have to learn to let go of it.” – Joanna Dwyer

“Invent activities that allow you sit or lie down. My kids became experts at card and board games because I could play lying down. And don’t count out the movie marathon. Your kids won’t be ruined by a day of snacks and movies under the blankets, cuddling with you because you’re just that sore or tired. Your kids want your time, not your physical prowess.” – Sharilynn Battaglia

Related stories:

11. Loneliness/Isolation

The isolation. Nobody can know, ever, how you feel.” – Mehreen M.

How isolating and lonely it is.” – Elizabeth P.

The loneliness. Even those closest to me try to understand, but no one else feels and experiences all of my symptoms and emotional journey the way I do. And I’m too fatigued to even begin to try to fully explain it.” – Becky M.

Coping tips:

“Like with my chronic illness diagnosis, acceptance is key. While the emotions of loneliness creep into my life, both expected and unexpected, I have to remind myself this is part of life and part of what happens with chronic illness for many. I am not as alone as I feel. I must recognize that my illness will make me feel even more alone than I am in reality. I can also control some of my loneliness by knowing some of the best friends to make are others who are chronically ill. There are always new chapters in life.” – Eileen Davidson

“Even though loneliness is, by definition, exclusive, we can find unity in knowing we’ve all felt excluded because of being chronically ill. We may not understand each other’s pain exactly, because every case, every person, is unique. But I’m still here because I know there are people out there who really do understand the anguish – maybe not the actual physical experience – but the loneliness, the isolation, the fear, the mourning, all the consequences of what stems from the physical deterioration… I hope you know you’re never truly alone in your battle.” – Megan Klenke

Related stories:

12. Being a “Full-Time” Patient

Feeling like a patient all the time and close family members getting sick of me being sick, not taking me or what I go through seriously and having to deal with it all by myself. I have no idea what my future will look like, I’m in constant fight/survival mode, I forget things I’m supposed to do… and the crushing feeling of loneliness.” – Daniela R.J.

Coping tips:

“Chronic illness touches every part of my life whether I want it to or not. I have to constantly remind myself that I am not my illness even though my life is inevitably defined by said chronic illness. In these cases, while stuck being defined by my pain and other symptoms, I can take back that definition and rewrite it. Instead of feeling weak for being defined by my chronic illness, I choose to be strong in that definition. If it wasn’t for my chronic illness I would not be the person I am today.” – Heather Ashley

Related stories:

13. Skin Issues

At one point I had erythema nodosum for a couple of months. Extremely painful, swollen lumps all over my legs. When my GI diagnosed what they were he even had the nurse come take a look. Since I was already on steroids they couldn’t do anything additionally to treat it, so I had to suffer through until it cleared up on its own. It was so uncomfortable to wear shoes because they rubbed on the huge nodules.” – Shawna R.

A skin condition called pyoderma gangrenosum. Had no idea that RA and my autoimmune disease would attack my skin. I won’t post a pic here but if you google it, it’s pretty scary. I honestly thought RA was all about joint pain at first.” – RA – A Patient’s Perspective

Skin issues, constantly buying expensive lotions that are odorless, soap-free lotions and shampoos… insurance doesn’t always cover these kinds of expenses.” – Pia T.M.

Abscesses, very hard, one day at a time…” – Barry W.

Helpful stories:

14. Depression and Anxiety

Depression. And mental health problems They go hand in hand. My body and mind are constantly fighting with each other.” – Seanna L.

Depression and loneliness. People don’t think about these two things when it comes to autoimmune diseases, but they impact us so deeply that we can’t help but fall into the traps of depression. Living life worrying about where the bathroom is and if you’re going to make it is not a way of living.” – Jennifer M.

The anxiety and depression. To cope I listen to music or watch one of my favorite movies.” – Ashlee A.

Coping tips:

“If you’re physically sick, it’s exceedingly normal to develop mental illness symptoms as well. You are not alone, and you are not to blame. But just because it’s normal doesn’t mean you can’t treat it and try to create a life with more peaks and fewer valleys. Like any other symptoms of chronic illness, there are steps you can take. There are medications. There are therapists who specialize in talking about illness. There are support groups and friends to talk to and books to read and meditations to do. It all might sound a little hokey, but it really helps.” – Samantha Reid

“Don’t ever be anxious or uneasy to reach out to qualified mental health professionals for help. You are valued and appreciated by those who love you, and you deserve to live the best life possible. That means acknowledging the dark and scary reaches of your mind and managing what you find there. And if you find depression there, you deserve to receive the necessary treatment to improve condition both physically, and emotionally.” – Amy Rheaume

Related stories:

15. Comorbidities

More autoimmune diseases. I was first diagnosed with Crohn’s disease and then 10 years later, ankylosing spondylitis. A year after that rheumatoid arthritis or psoriatic arthritis (some question which it is).” – Donna M.B.

Coping tips:

“One challenge or change can lead to another and another and another challenge or change. It snowballs.. I am coping with things one by one as they arise. Whatever can be healed or improved, I am working to heal and improve. And over time, even if the snowball effect happens, there is less snow to be picked up and dragged along down the hill. Over time, with good care and more coping skills and better management and medication changes and surgeries and therapies, I will cross symptoms and struggles off the list.” – Christy Bloemendaal

Related stories:

16. Guilt

I suffer from almost all the symptoms mentioned above, and they all cumulate into guilt. Guilt for not being able to work and pay for my own medical bills, let alone rent and utilities. Guilt for being too ill to cook, clean or even do my own laundry. Guilt for missing out on family events because I am too ill to attend. Guilt for needing rides to doctor appointments because my car no longer runs and my husband, who supports me in every way, can’t afford to fix it or replace it. Guilt.” – Barbara E.

Coping tips:

“If you are feeling useless and guilty about needing help to manage an incurable disease, don’t be so hard on yourself. Chances are, the only one who feels like it is a burden is you. You are not the same person you were before you were diagnosed and you shouldn’t act like you are. Being kinder to yourself is a great medication and by taking the time to take care of yourself, you can help ease your mind of these harmful and unnecessary feelings.” – Kelly Glover

“You, my dear friend, are not a ‘burden.’ Your illness is a heavy weight, and it is your weight. But even being solely yours, it cannot be carried by you and you alone. Because you are a friend, family member, gift, warrior and fighter, chances are you have a support system to help you carry it. Do not be afraid to ask for help. The ones who are meant to stick around will ask how they can help share that weight whenever they can. You were not made to carry this alone.” – Mary Puglisi

Related stories:

17. Grieving the “Old You”

I miss me. I just can’t do what I want anymore, sick of being in pain and hate putting on a false front when people ask, ‘how are you?’ and you say, ‘oh yeah I’m OK,’ but you’re not. Every step you take just feels like you are just having your joints crushed or they’re in a vice. It’s just exhausting doing this every day, but I look at my kids and feel so guilty ’cause I can’t do what I used to do with them. We plan to go somewhere then I’m in that much pain and so tired we can’t go. They say, ‘Mum, don’t worry, we can do it another time.’ So then you feel worse – it just goes on and on.” – Yvonne M.A.

Coping tips:

“I grieve ‘the old me’ as it often sneaks up on me daily. My chronic illness has impacted my career and I am currently unable to work. When I catch myself entering a moment of grief, I acknowledge the feeling and then seek out the positive things happening in my life at that particular moment. Finding gratitude even in the small things helps me to work through the difficult feelings associated with chronic illness.” – Angela M.

“It’s OK to feel sorry for yourself and grieve for the life you once had. It will also be OK when you are able to find acceptance and move on to a place where you can look back at your former self without feeling pain, and can feel happiness because of who you were and realize you are still that person. You are still the same person you were before your diagnosis. You may even be better because of it.” – Jennifer Yant

Related stories:

Getty Image by SvetaZi

Originally published: November 29, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home