20 'Embarrassing' Symptoms of Autoimmune Disease We Don't Talk About
Autoimmune diseases come in a variety of shapes and forms, each affecting different organs and bodily systems (for instance, Crohn’s disease primarily affects the gastrointestinal tract, while rheumatoid arthritis primarily affects the joints). Although each disease has a unique M.O., those with autoimmune conditions may struggle with many of the same frustrating and undesirable symptoms and side effects that can occur when the body mistakenly attacks its own healthy cells.
There’s no reason to feel ashamed of any of the symptoms you experience, but it can still be embarrassing when your body behaves in ways that are totally out of your control. Maybe a flare-up has caused a number of unsightly physical symptoms to emerge (between eye infections and skin lesions, story of my life!), or maybe you have to suddenly excuse yourself from an important work meeting and race to the bathroom – because once that train starts rolling, there’s no stopping it.
While it may be difficult to talk about the less-than-glamorous symptoms autoimmune diseases can produce, being honest and open about the many ways they can affect someone is an important step toward raising awareness. That’s why we asked our Mighty community to share some of the “embarrassing” symptoms they’ve experienced due to autoimmune disease – symptoms we may not talk about often, but ones that deserve recognition and understanding nonetheless.
Even though the symptoms of your condition (as well as some side effects of medication) may be totally out of your control, it can still be challenging to grapple with the physical, emotional and cognitive effects. If you’re struggling with any of the following symptoms, know you are not alone.
Here’s what our community told us:
1. Brain Fog/Memory Issues
“Inability to communicate and use words appropriately. I think of something I want to say and by the time it should cross my lips (like within seconds) I can’t remember a key word or phrase which would have applied. This can happen all day long or randomly. My word recall is mostly absent.” – Llana H.
“My memory issues. They wreak havoc on everything from my ability to go places to my ability to recall names of people and things, dates, etc. It’s humiliating.” – Stacy C.
“The brain fog, especially as it pertains to conversation… and some days that includes zero patience with myself and others. I get so mad at myself for getting flustered and irritable when I’m trying to listen to and understand someone and I just can’t concentrate. I worry that people will think I’m just in a bad mood or I don’t care about them. It’s so much more than that.” – Teresa M.
“Fatigue. It is embarrassing needing a rollator (walker) to walk around in a mall or a store at 30 years old. It is embarrassing that I need to rest after walking short distances. It’s embarrassing that I need help showering and dressing sometimes. I hate fatigue.” – Charlene M.
“Passing out from fatigue. I’ll get so tired from fibromyalgia, RA and chronic fatigue et al, that I will just drop where I am. I have to be very careful where I go and how I do things.” – Sheryl C.
3. Excessive Sweating
“I have fibromyalgia. The most embarrassing symptom I have is sweating uncontrollably. It can be cold out and I’m still soaked! I never know when it will happen either.” – Shirley A.
“Hot flashes. Most people with Hashimoto’s disease and hypothyroidism are cold all the time. Not me. I sweat like crazy and look like I just got out of a shower. I used to have long beautiful hair and I couldn’t take it any more.” – Melanie B.G.
“I have AIH [autoimmune hepatitis], Graves’ disease and diabetes. Sweating. It could be winter, I could be freezing… I have huge sweat marks under my arms. I put on a new shirt, five minutes later I’m soaked through. No reason to it, it just turns on and that’s that. No antiperspirant will stop it.” – Joy A.S.
4. Bladder and Bowel Incontinence
“Bowel incontinence. Oh yeah. This has been haunting me for years, I can tell you some pretty horrible stories. It’s played a part in me quitting jobs in the past.” – Alane P.
“Incontinence. I am 25 years old and have to wear incontinence pads because I am constantly leaking urine and also have accidents on a regular basis, and sometimes due to my IBS also can have bowel incontinence which is super embarrassing.” – Clarisce J.S.
“Yesterday, [I was] out shopping and the IBS that comes with my fibro and other things hit like a flash… And the restroom in the store I was in was out of order. I had to abandon my cart of clearance goodies and bail out for the next store over.” – Michelle R.H.
“My random hives outbreaks. People act like I’m contagious, when all I am is extremely itchy, painful and uncomfortable.” – Stephanie M.
“Hives! I constantly look like I have some horrid contagious rash! Itching isn’t a good look. People look at me like I have the plague!” – Meemaw J.
6. Dental Issues
“My most embarrassing issue with my autoimmune diseases is my teeth. I am in so much constant pain. But, I try so damn hard to not let others know.” – Sarah K.
7. Needing to Cancel Plans
“Having to back out of plans at the last minute, especially ones where people are counting on you. All because you are exhausted and people think you are just lazy or tired.” – Dawn N.
8. Skin Lesions
“Open sores all over my face and neck which tend to crack and bleed just because I changed my facial expression or smile. I often work with kids who, of course, will ask if those hurt. Yes they do, sweetie. They are itchy and painful 24 hours a day. They can take weeks or months to heal before another one pops up. People often assume I’m better when I have a few days without them. Nope. Most of my pain is invisible.” – Llana H.
“I get lesions in my mouth. They hurt but I can deal. More annoying is I get the breakage out over my lips. It looks like they’re chapped but they aren’t.” – Elizabeth A.
“I have erythema nodosum which causes painful red bumps to appear all over my arms and legs. People have asked if I have chicken pox, or if I laid down in an ant pile. Nope, my body just does this. It’s even worse on the rare occasions when they ulcerate.” – Paige A.
9. Weight Fluctuations
“The weight gain I got after having a bad flare-up and was stuck in bed. I am already working on losing it and not staying that way but it does makes me feel bad. It’s hard when it hurts to move.” – Jenny W.S.
“The moon face was one hell of a deal. I wasn’t able to look in the mirror, and I suddenly gained so much weight… I wouldn’t dare to even go to the street, I was so afraid of people.” – Tabányi R.
10. Constantly Getting Sick
“I know fibro can impair a person’s immune system and I have that. However, I was also born without tonsils. The lymph glands under my jaw are constantly swollen and I will get colds/flus for two to three times longer than normal people. I also get sick much easier than healthy people because of these issues. It gets embarrassing when I have to cancel more and more plans because I’m sick ‘again.'” – Mikki I.
11. Excessive Hair Growth
“One of my illnesses is PCOS [polycystic ovary syndrome], which can cause excessive hair growth, and severe acne around the chin area is common. I have to shave my face with a razor blade every day because I will grow a beard and I’m not confident enough to just let it happen.” – Jennifer W.
“I have PCOS. So last year for November my husband and I had a contest, who could grow the better goatee. So it was funny going around daily life with facial hair and seeing kids’ faces. Getting questions. I even got women coming up asking and then hugging me tight and saying me thank you for being strong and being me.” – Tori Jo M.
“Facial flushing, my cheeks are almost always red. People assume I’m embarrassed or flustered.” – Tylor R.C.
13. Constant Infections
“Because I’m on immunosuppressants, I’m very prone to infections. Lately I’ve been getting a lot on my face/head that cause my eyes, ears and nose to swell, turn red and get all crusty and gross. It’s nearly impossible to hide.” – Alanna W.
“Yeast infections, skin infections, infections in general. Days after my [infusion] something gets infected. I hate it because I get the side effects of the medicine and the symptoms of the infection! But the funny thing is when my medication wears off the infection goes away. This is my life with Crohn’s disease.” – Morgan F.H.
“The seborrheic dermatitis on my face give it a flaky, red, peeling look that breaks out for weeks at a time. I go into mild remissions, but when my immune system flares up it gets awful. What’s more noticeable than right on my face? I learned to ignore the stares and just roll with it.” – Bailey S.
15. Digestive Issues
“I have celiac disease among other things. The gas and bloating are embarrassing and smelly.” – Katie M.
“Constipation. All the time. Doesn’t matter if I eat well or if I have to take pain meds. We’ve changed my diet and supplements. Nothing really works. So between feeling gross on the inside and gross on the outside from sweating I just never feel pretty or even normal.” – Linda S.
“The IBS and other gastrointestinal problems! You can’t even tell anymore if the symptoms are from the condition itself or from one of your medications and either way you can do nothing to prevent or manage them a lot of the time. It’s embarrassing if you’re outside or at someone’s place and are stuck in a bathroom that’s not yours for ages.” – Samah C.K.
16. Genital Ulcers
“Thanks to Behcet’s disease, I get large, painful ulcers in places the sun doesn’t shine. Of course, it’s not something people ‘see,’ but it can be really uncomfortable to explain why I’m walking funny or why I grimace in pain when I sit down. It’s not exactly the sexiest thing to have to explain to a partner either. And before my diagnosis, it was so frustrating to have to fight with doctors who refused to believe it could be anything other than an STD. I’ve been getting these since I was a baby. It’s not an STD, I promise.” – Paige A.
17. Involuntary Muscle Movements
“I have myasthenia gravis, which affects the voluntary muscles. The two things that bother me the most are when my symptoms really flare, my right eye becomes droopy. It’s difficult for me to walk around with one eye half open, or not open at all. I can wear sunglasses if I’m outside, but try wearing them inside a dark restaurant at 8 p.m. The second thing that bothers me is sometimes I drool a little bit. I’m very embarrassed when it’s happening. Again, it’s not something I can control. It’s not even something that can be hidden. On days that my visible symptoms are flaring, I don’t want to leave my house.” – Chrissy T.
“I get twitching and numbness in my face. I feel embarrassed that it happens and wish it wouldn’t. It started after my second parathyroidectomy, and going hypo. It’s hard for me to accept that the surgery that was supposed to make me better left me a lot worse.” – Brittany J.
18. Balance Issues
“I lose my balance a lot. I also have shaky hands. I try to just go with it so it looks natural but kind of hard to do when I have to go to the ER because I fell.” – Acadia M.
“My migraines can make me sick to my stomach but sometimes it’s the easiest way to break the pressure. It’s super embarrassing when my coworkers find me curled up in a ball ‘bonding’ with the restroom in our office…” – Stephanie D.
“Throwing up. It is a daily part of my life but I hate even the thought of eating out anymore.” – Susan D.
20. Difficulty Keeping Up With Personal Hygiene
“I’m not able to bathe as often as I’d like and I smell. I don’t know if other people can smell it but I can. Yuck.” – Katie M.
“I hate that I don’t have the energy to look beautiful anymore. Even on my best day taking a shower and putting on clothes that have no buttons or are too tight is my best. I can no longer blow dry and curl my hair or wear a ton of makeup and tight clothing. People looking at me just see a woman who made little effort to look good that day when reality is I spent an hour just to look ‘mediocre.’ I have family and friends who don’t get it. They say, ‘Well, if you just woke up and got all done up every day you would feel better.’ No one understands it is not a choice to be makeup-less and hair in a ponytail – that is my best. Some days I just cancel plans because I can’t get in the shower or put on the clean yoga pants.” – Janine T.