If you have an autoimmune disease, you’ve likely spent a lot of time talking about the “major” symptoms of your specific disease(s) with your doctors, and even perhaps friends and family. But autoimmune diseases and the symptoms they cause are wide-reaching and can affect your entire body (and mind) in ways that aren’t often discussed. For example, perhaps your doctor doesn’t ask you about how your illness affects your mental health, or maybe in your research about your illness, you didn’t come across anything about fatigue and how challenging it can be.
However, even if some of your challenging symptoms aren’t talked about much, that doesn’t mean you’re the only one dealing with them. We wanted to bring the tough (but often hidden) autoimmune disease symptoms to light, so we asked our community to share the worst symptom of autoimmune disease they experience that isn’t talked about — and how to cope with it.
If you can relate to these symptoms, know that there are others out there dealing with them alongside you. Be sure to check out our community’s advice for coping with the challenges of chronic illness and autoimmune disease, too.
Here’s what our community shared with us:
1) “The extreme fatigue from going to doctor appointments and infusions all the time. Gotta keep going even when you don’t feel like it.” — Amber T.
2) “The mood swings. They may be a result of medication, of chronic fatigue, pain… Even just the sheer frustration of not knowing what’s going on with your body and why it’s attacking itself. And those mood swings can be so sudden; one minute you’re laughing with someone, and the next you’re sobbing in a corner because your mug of tea was just that little bit too hot.” — Laura C.
3) “No matter the symptom, the side effect of helplessness is the worst thing to deal with. When you used to be able to command your body to do whatever you desired, having to bow to the relentless symptoms that makes it impossible to push past headache, fatigue, back pain, nausea, depression, anxiety and muscle weakness (to name a few), it’s the helplessness that’s the worst cross to bear. Not to mention the helplessness that comes from others’ judgments on how you should live, receive treatment, work or not work, or even how you should be sick. Helplessness, for me, is the worst symptom of having these illnesses.” — Bin T.
4) “Lack of sex drive and the effects on your relationship.” — Amy S.
5) “Fatigue and brain fog. I freaked out the other day because I thought I heard an alarm in my house, but it was actually my microwave going off after a 30-second timer that I had already forgotten starting! I have had to cope by changing my perspective on rest; those periods spent on the couch aren’t laziness to punish myself for, they are charging time.” — Caroline H.
6) “Flare-ups of pain accompanied by chronic fatigue. [You can cope by] keeping positive and listening to your body. Knowing when to keep moving and when to rest when you can.” — Marlene B.
7) “The skin burning. It’s not just lupus — several AI sufferers experience skin burning.” — Carrie P.
8) “The link between pain and fatigue. Energy has become a currency that I have to bargain with very carefully — even on good days. No one ever really discusses the cost of a good day. I’m still exhausted and using my ‘spoonie emergency pack’ by the end of the night to keep my body functioning and my pain levels down. If one gets out of control then I start to spiral down.” — Kristen K.
9) “For me it’s when shopping and I have to stop and think if buy that will I be able to open it. I get embarrassed watching my housemates opening stuff for me like it’s the easiest thing ever.” — Lizzy H.
10) “Severe hair loss, it’s absolutely devastating at only 35 years old.” — Jennifer B.
11) “Feeling lonely. It’s hard to be the only one in my family with an autoimmune disease. It can feel very isolating and I worry that my family gets ‘annoyed’ with me because of all my problems. It seems like I’m always sick. I never feel ‘good.'” — Katherin M.
12) “Pain and mood swings. [To cope] I allow myself to rest and disconnect from the world, to watch cartoons and cry if I feel like doing it.” — Eva D.
13) “Not knowing whether it’s a multiple sclerosis flare or rheumatoid arthritis flare! Having two conditions is confusing.” — Ciara M.
14) “Aside from many physical symptoms, mental/physiological worries are never far away. Fear of what is to come. Will my condition improve with drugs? Will it worsen? Will things pan out the way I hoped they would or will I have to rethink my whole life plan because of my health?!” — Emma A.
15) “Painsomnia. Relying on others. Taking it day by day is the only way to go. Each day is a new adventure!” — Marcee H.
16) “Fear. Afraid to do certain things or eat certain foods because our bodies may not like that and cause a flare-up.” — McLinda W.
17) “Definitely depression when you aren’t able to do the things you love or used to do. People don’t like talking about the bad days when you struggle to get out of bed through pain or depression. That complete sadness that overtakes your whole body as you mourn the loss of something that in the past was easy. You close yourself off from the world because you can’t put on that brave face people have become used to, you cry, alone, for the same reason. When you do let people hear or see it they comment that you are always so tough and so brave and that it’s hard for them to see you cry. So… up go the walls and you hide everything behind them so people don’t feel uncomfortable seeing the real you.” — Mhairi G.
18) “Side effects from meds, and taking meds to help with the side effects. ‘This drug wont help, but its side effects will put your problems to shame.'” — Tiffany T.
19) “The chronic fatigue for sure! Sometimes there is nothing that can be done about it except to allow yourself to rest.” — Stephanie B.
20) “Getting stressed is the surest way for me to have a Hashimoto’s flare. Which makes me more stressed. Which makes the flare worse. It can be horrible trying to get it under control.” — Karen T.
21) “Catching every contagious illness that comes around which makes you flare like crazy.” — Kat E.
22) “Breaking out in a itchy/burning rash when exposed to sunlight.” — Stephanie D.
23) “Honestly I think the mental stress and depression that can come from dealing with this constant, unwelcome companion [is the worst]. I feel like the mental affects aren’t discussed openly (at all, but in conjunction with autoimmune disorders in particular here). People who don’t have an autoimmune disease don’t understand just how much it weighs on you day in and day out… The way I cope with it is sometimes by journaling and other times by just letting it out and letting myself be mad and sad that I have to deal with this each day. Letting myself have those dark days and even weeks when it feels unbearable because it’s OK to not feel great or really hate your disease sometimes… I think more resources to talk about these kinds of things would be amazing.” — Shea M.
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