20 Side Effects of Autoimmune Disease We Don't Talk About – in Photos

There are more than 100 identified autoimmune diseases (such as lupus, rheumatoid arthritis, Crohn’s disease, type 1 diabetes, multiple sclerosis and celiac disease) that each affect different organs and bodily systems and produce a unique array of symptoms.

Certain autoimmune diseases may be known for a few primary symptoms (for instance, the average person might associate rheumatoid arthritis with joint pain) – but the reality is that while these primary physical symptoms can certainly be debilitating and life-altering, there are countless other ways the condition may affect a person’s life.

It’s important to recognize and talk about the lesser-known side effects of autoimmune disease so those with autoimmune conditions can be better supported by loved ones, and better understood and treated by doctors. So, we asked our Mighty community to share a photo of a side effect of autoimmune disease they experience that’s not often talked about. Perhaps you’ll recognize some of your own experiences in the photos below.

Here’s what our community shared with us:

1. “During my last bad UC [ulcerative colitis] flare, my fever spiked to around 103.5. I tried bringing the fever down with these freezer packs, but inevitably I ended up in the ER and was admitted for the third time that year.” – Jacky R.

2. “Random arthritic attacks in random joints, at any given time, for no particular reason brought on by lupus. That toe got about 10 times worse a few days later. I couldn’t even fit my foot into my shoe anymore. I’m a very athletic/active person so when this happens I take it very hard. I had to resort to wearing sandals with socks in April because nothing would fit on my foot.” – Vanessa C.

3. “Cuddling with my daughter at the hospital because she misses me. I also have had to miss out on my children’s activities that are so important to both of us. Or missing holidays or family events because you’re too sick, or in the hospital. Most of the time I suck it up, put a smile on [my] face and pretend all is good. Meanwhile my body is in excruciating pain. And I pay for it the following few days.” – Michelle S.

4. “Purple hands! Happens on both sides and sometimes hurts. Rheumatologist thinks it might be Raynaud’s but my fingers never change color.” – Jordan D.S.

5. “When your face can change so drastically in the matter of a week. From eyes so irritated you can’t get relief, to normal, and swollen from who knows what.” – Sarah M.

6. “Hair loss. Doctors say it’s normal, but it doesn’t feel like that. My hair keeps falling no matter what I do and it is hard to see every day how it gets worse.” – Silvia G.G.G.

7. “My before, during and after of being on prednisone for six months at the max dosage. They don’t tell you in the beginning all the risk with these medications. Steroids are a double-edged sword for a lot of patients with UC. We know it will pull us out of a flare but it also ended up causing severe weight gain, and osteoporosis in my back. My face was so swollen blood vessels were popping on my cheeks.” – Kendra R.

8. “Deformed hands due to 45 years of rheumatoid arthritis, one knuckle joint is pressing onto another finger and eroding the flesh and bone in that finger. Awaiting a date for an operation to amputate one or possibly two fingers.” – Jill C.

9. “[I’m] 39 years old with multiple sclerosis and fibro… and a walker and cane are part of my life now. It’s not talked about because it makes people uncomfortable. We still live in a judgmental world.” – Melissa H.

10. “The never-ending tiredness and fatigue. I’m at doctor appointments almost daily (I have 17 doctors and specialists to keep up with due to multiple health conditions) and it takes its toll. When we are young (I’m 25, diagnosed with UC at age 14) others think we can keep up and work and always do things. I’ve never been able to work because my health is my full-time job. I get weekly iron infusions when my counts are low and it’s the only thing that really helps the fatigue. Otherwise I don’t think I’d be able to function. I’m thankful for having a power port now because it makes having infusions a breeze. #IronWoman” – Amber T.

11. “Painful blisters/sores on my arms, hands and knees. Happens after I have a really bad flare. First I feel sick, next I get body pain with extreme fatigue and then the blisters come. They turn into sores that last for weeks.” – Rebecca J.

12. “Having naps then waking up to go to bed. Some people don’t know being me means hiding away and sleeping so much, sometimes on and off for days. It feels awful. Then to be told by doctors there is no reason for pain or that because my case isn’t urgent, I can be put on 12-month waiting lists to be seen by specialists. Waiting for life to be normal to even consider living or [having] fun again is killing me.” – Erica W.H.

13. “Life with RA [rheumatoid arthritis] means your bird learns where to stand post-op!” – Becca H.

14. “My fatigue gets the better of me at work. Couldn’t keep my eyes open, had to go home and sleep. Days like these I can’t stay awake. I was lucky I drove home safely. Open the car windows and listen to music loudly.” – Elena G.B.

15. “This is what happens after I spend three hours at an infusion. I also get anywhere between three and four other bruises during the same appointment because my veins are terrible and the nurse always has trouble finding one. I become a human pin cushion.” – Ashlee A.

16. “I have EDS [Ehlers-Danlos syndrome], Crohn’s and sarcoidosis. Sometimes my health impacts my self-confidence. For example, as seen in this picture, my health causes me so much anxiety that I question everything about myself. On days I look my best, I could take a thousand pictures and still think I look horrible. I doubt myself in all aspects of my life, not just looks. But thanks to my amazing family and friends, I can often work through the ‘side effect of my autoimmune diseases.’” – Em C.

17. “The crushing weight of not knowing when a flare-up is going to finally end.
After seven months of a flare-up causing rashes, my eyes swelled up so bad that I was on an IV and over 20 pills a day. I was forced to leave my job in China and when I landed back home in Toronto, I had to go straight from the airport to the ER. Still waiting to see the rheumatologist, the prednisone the ER gave me didn’t help. I’m beyond the end of my rope.” – Emily G.

18. “When your life is put on hold for five days. We all know about this. For me, it’s the last option of choice (with few choices available). Just trying to keep head up and hang on. I know it will take me months to feel like getting up and what function I had is probably gone forever.” – Amy A.S.

19. “This is me actually enjoying some sunshine and fresh air on a fairly good day… But I don’t look sick, right? We won’t talk about spending two days in bed after this was taken.” – Nicole P.E.

20. “There are so many physical or visible side effects to living with an autoimmune disease that people don’t really talk about, including weight changes, hair loss, hospitalizations, tons of medications (and their side effects, such as welts from injections or weight gain and insomnia from steroids, on top of everything else), rashes, sensitivities to foods, the sun, etc., fevers and isolation. These pictures are only pieces of the story from hospital stays, medication times, and welts from injection sites, but what you don’t see in the picture is [the] constant struggle of fighting against my body fighting against itself every single day. A picture cannot convey the many nights I’ve cried feeling so defeated by my disease and feeling depressed, exhausted, lonely and afraid for the future. Depression, anxiety and fatigue are huge side effects to having a chronic illness that a picture cannot paint, and it needs more attention and understanding, even if you can’t see it.” – Destiny C.