23 Honest Photos of the 'Embarrassing' Sides of Autoimmune Disease We Don't Talk About
Life with autoimmune disease can be frustrating, to say the least. Your body gets confused, attacks itself, and despite any telepathic pleading for your immune system to please get it together ASAP, it continues to cause you pain, uncomfortable symptoms, and a plethora of side effects.
But even though your disease is, yes, technically caused by your own body messing up, it’s not your fault, and it’s often not something you have much control over. And yet, feelings of guilt, shame and embarrassment are so common amongst those with autoimmune diseases. Whether your symptoms are visible or invisible, it can be difficult some days to feel confident in a body that seems intent on destroying itself.
I’ve lived with autoimmune issues my entire life, and though I know logically that there’s no reason to be embarrassed about symptoms and side effects that are out of my control, it’s still so hard to put that into practice when my Behcet’s disease causes a rash on my legs or bloodshot eyes, or my medications cause unintentional weight fluctuations, or my symptoms prevent me from partaking in activities most people in their 20s are able to do without a second thought.
If you don’t feel any embarrassment surrounding your health, that’s great! Don’t let anything change your outlook. But if you do deal with feelings of embarrassment, you’re not alone. The only way we can break the shame and stigma surrounding “embarrassing” symptoms is to talk about them, so we asked our Mighty community to share one photo that shows an “embarrassing” part of autoimmune disease they struggle with.
Even though there’s no need to feel embarrassed of something that’s totally out of your control, experiencing these feelings is natural and completely valid. It’s more than OK to not be OK, and there is no shame in struggling with autoimmune disease.
Here’s what our community shared with us:
1. “Ruling the day to maybe making it through a day.” – Coco R.
2. “I dealt with a case of chronic erythema nodosum from my Crohn’s disease. My legs looked like this for almost two and a half years in various stages. Besides the obvious ugly nature of EN and the fact it can become quite painful, what was especially difficult was that I didn’t present as a typical EN patient at first and even though I knew that’s what I was dealing with, it took quite a while to convince the doctors. Once they finally came to the conclusion that it was indeed EN, I had to have extensive treatment changes and dosing increases before my legs finally cleared. It was definitely another lesson to my doctors that I’ve never presented with anything textbook and now they try and look outside the box a bit more.” – Julia C.
3. “The ‘I’ve got a plug’ face. The two weeks after surgery blockage and the constant nagging voice in your head reminding you that what you eat may plug you up or cause you pain to the point of an emergency hospital visit. Now with every pain, bloated feeling or day where I don’t have more than one BM, my mind goes straight to ‘uh oh, am I getting a blockage again?’” – Stefan W.
4. “Although it isn’t a symptom of the condition, the moon face caused by prednisone can be quite embarrassing. Sometimes I show people old photos and if they didn’t know me pre-pred, they often don’t believe it’s me in those photos. However, an embarrassing symptom of my psoriatic arthritis would be having to explain why one day I’m able to do this and that but just days later cannot complete the same tasks. Being 19 years old, when you start explaining you have arthritis there is no short answer to anything because people have 100 questions due to the lack of awareness associated with autoimmune arthritis.” – Sarah B.
5. “I have lesions just like this not only on my back, [but on] my front side, my side and scalp. These lesions are extremely painful. I also have sores on my face. All of my hair fell out, I have extreme fatigue, headaches daily, new lesions developing, this is just the tip of the iceberg. I have other complications from lupus. First I was diagnosed with discoid lupus, then Sjogren’s disease, inflammatory lupus and now systemic lupus. Life as I knew it before lupus was good. Life with lupus is pure hell. The scariest part is not knowing where this came from and there is not a clear understanding of how you can get it. Your own immune system is killing you. How do you deal with that? Depression takes over, however I have a God that keeps blessing me every day. Each day I say, ‘I made it through another day’s journey. God kept me here.’ I will continue to fight for as long as God allows.” – Benetra K.
6. “Not sure what wins. Cankles that hang over my shoes, the acne from inflammation or the hair loss from meds. I’ve got a photo of the cankles. Having a stranger notice, gasp and say ‘ewww’ to their friend is pretty high up there on embarrassing.” – Tawnee T.
7. “For me the most difficult symptom is urgency. It’s not visible in photographs but it’s always there. I work full-time and have to commute on the train. The public transportation in NYC is terrible and there are often terribly long delays in tunnels with no bathroom or escape in sight. I have had some dire situations on the train that I barely got through with my dignity intact. It is truly the most helpless feeling. There are no restrooms and no control whatsoever of the location and length of time you’ll be stuck with no bathroom access. This is a massive source of stress and anxiety for me and I live in fear of having an accident while on the train.” – Sara E.C.
8. “Here’s a side by side of my vasculitis when it’s mild and not so mild. I’ve been in drug free remission for a while now so hopefully I’ll stay free from flare-ups! However, this made it hard to wear capris or shorts because I’d get funny looks. Even to the point where people wouldn’t sit near me… I’m not contagious!” – Kaitlyn A.
9. “I have a prescription electric wheelchair and an aide to help me with dressing/showers etc. I’m also unable to shave and do the ‘extras’ when it comes to hygiene such as doing your hair and makeup. It’s hard being a young female in the summer with hairy legs but that’s the result of not being able to shave your own legs. I’ve had (juvenile) rheumatoid arthritis since 10 months old.” – Courtney F.
10. “I scratched an itch. Took three weeks to go away.” – Honesty L.L.
11. “I have Hashimoto’s. The extreme fatigue is awful. I hear all the time, ‘you look so tired!’ This is just my face now. The dark circles under my eyes never go away. I’ve been told I’m lazy for needing to nap after work and for struggling to get up in the mornings. But there are days I’m afraid I’m going to fall asleep driving the mile from my job to my house. I feel like I’m living in a thick dark fog.” – Megan P.
12. “Probably the most difficult and annoying symptom for me is Raynaud’s!” – Emmy L.
13. “Prednisone moon face to try to control Crohn’s and rheumatoid arthritis (RA). Also unexplained bruising.” – Nicole C.P.
14. “Because of my RA I have uveitis in both of my eyes now. My left started over 20 years ago. I had numerous surgeries and lost my sight. Eventually it started dying and looked like this. I get people asking how do you make your eyes look two different ways or just a look of complete disgust. It’s hard when you have no control over how you look. So this is my most embarrassing.” – Tonya R.
15. “Deformities and scars. Always lead to bullying in my younger years (even college) and horrible comments, but now when I teach the kids don’t understand, unintentionally say rude things, or act extremely grossed out. One never does know what to say when a 7-year-old is repulsed by deformities you can’t control…” – Mickey M.
16. “My livedo reticularis rash, i’ts always there but it comes out more vividly when my disease flares. I’m quite conscious of it as it’s on my arms, legs and trunk.” – Janey G.
17. “Struggling through another strange flare. I had to cancel all of my plans for today and probably will have to do so tomorrow. My face is puffed up, my stomach is upset, and I’ve got no energy whatsoever. Between my autoimmune disease causing issues everywhere and all of the side effects of medications I’m on, life can be hard.” – Beth M.
18. “I have lupus and have suffered with a constant facial rash for a few months (it’s finally improving). It’s mainly embarrassing. People say it’s not that bad but you can feel the stares when you walk into a room and you know they want to ask ‘what’s up with your face.’ Makeup only does so much and the texture of my skin doesn’t really allow for good application. It’s also on my chest unfortunately.” – Kimmie G.
19. “My medicine makes me feel a little better, but it also causes hair loss. You can’t really tell if I wear it up, but it’s pretty obvious once I take the ponytail down.” – Megan P.
20. “Moon face has stuck around… and kept on the prednisone weight… oh and now I may have avascular necrosis because of prednisone.” – Ember G.
21. “Getting a rash from being out in the sun for 20 minutes and then being asked if it’s contagious.” – Sarah K.
22. “Being the youngest person at the infusion center. As well as having people stare at the bruises I get after having an infusion. Also trying to hide any swollen joints and the fact that my hands just won’t work the way I need them to.” – Elizabeth P.
23. “Fatigue: so exhausted [I] can’t even lift my arms to wash or brush my hair.” – Renee L.P.