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21 Photos People With Autoimmune Disease Want to Post on Facebook, but Don't

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Autoimmune diseases can manifest in a number of different ways. 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, producing a number of both visible and invisible symptoms.

Regardless of how it affects you, opening up and sharing your experiences with your disease can be scary. Posting photos or updates on Facebook can help others stay informed and support you, but it can also open to the door to judgment and hurtful comments. Although we should all feel comfortable being honest on social media about the ups and the downs in our lives, the unfortunate reality is that there is often a pressure to only post about the positives. And for those struggling with the daily battle of chronic illness, this pressure to hide such a big part of your life can ultimately be damaging to your physical and mental health.

There may be stigmas surrounding sharing details of your chronic illness online, but being honest about your day-to-day reality can be beneficial for you as well as those around you. We asked our Mighty community to share photos of their lives with autoimmune disease that they want to post on Facebook, but don’t. Let’s shed some light on what it really means to live with autoimmune disease to increase understanding and start breaking down the stigma against being “real” with your friends online.

Here’s what our community shared with us:

1. “Posted it to IG but not Facebook. Too many people already feeling sorry for me or thinking I’m overdramatic, not many really understand. All I can say is the pain is very real, the weight loss is very real and the effects on my organs are very real. No pity or dramatics need be added.” – Deena R.

woman wearing glasses and a warm hat while lying in a hospital bed and frowning

2. “Me and my butterfly rash from SLE with photosensitivity rash mixed in there like a poorly blended watercolor!” – Emily C.

woman with butterfly rash on her cheeks due to lupus

3. “This is a picture I’ve thought about posting on social media, but never have found the right way to do so. This picture represents a tiny percentage of the financial hardship of living with autoimmune disease. I don’t know if it’s fathomable for those who aren’t walking this path. This picture also reminds me how extremely grateful I am to be healthy enough to maintain my full-time job, and to work for an employer that values quality medical care for its employees. I’ve not always been healthy enough to work full-time and have these kinds of benefits, so there’s always fear that any day I could be back in that place where my body won’t let me do the things I love, which also provide for my family. I haven’t shared this image on social media because very few people know the true extent of my health issues. I fear that if my colleagues or even some friends really knew all that I’m dealing with, they would treat me differently or make assumptions that I’m not capable. I have these fears because I have been treated differently once people know, even some of the closest people in my life.” – Ginny H.

a receipt from Walgreens saying your insurance saved you $5856.39

4. “Infusion for Crohn’s disease. I haven’t posted because I feel like people are tired of hearing about me being sick. I’ve been sick since I was a teenager. At 57, I’m on my fourth autoimmune disease. I feel like everyone must think I’m exaggerating.” – Becky S.P.

woman receiving an infusion in her chest

5. “In the late ’90s I had a persistent cough. Every time I got stressed out I would have this cough. As the years went by the cough got worse. If I caught a cold it would last for months. Around 2004 I lost a lot of weight really fast, about a year later I couldn’t get out of bed. Every time I walked I couldn’t breathe, my joints felt like they were on fire. I went to the hospital several times and they couldn’t figure out what was wrong with me. I caught pneumonia about four times a year and I suffered silently. The doctor thought I had tuberculosis then they thought I had lupus then they came to the conclusion they didn’t know what it was. After suffering for almost a year I got a second opinion – the pulmonologist diagnosed me with sarcoidosis. I had never heard of that before. As a result I am on oxygen, I take monthly chemotherapy infusions, I’m on a ton of medicine and I take methotrexate injections every week. Sarcoidosis is a horrible debilitating disease. Sometimes I beat myself up because I should have gotten medical attention early on.” – Will R.

woman wearing a bedazzled baseball cap while receiving an infusion

6. “I actually did post it but no one said anything. I have psoriatic arthritis and psoriasis.” – Nicole M.C.

woman's feet with psoriatic arthritis on the tops of her ankles

7. “My last hospital visit. I am covering up my nasal tube. And wearing silly PJs from my sister.” – Lance S.

man in a hospital bed covering his nasal tube with his hand and wearing pajama pants with rainbow-colored kittens on them

8. “When I first started my immune system suppressants and this happened. This isn’t even its final form, it got worse and also not depicted is the spreading into my inner lip.” – Shay-Leigh M.

woman with a sore on her lip

9. “Has never been posted because I felt that it was real then… Yes, this is my wheelchair the day I bought it a few years back.” – Anne R.

black wheelchair

10. “Prednisone has struck again. Physically I feel better but at night, my thoughts are relentless. But this is real – I have to choose what side effects and symptoms I live with. I didn’t post it because I feel like people already think I’m overdramatic.” – Kristin M.K.

photo of a woman looking at the camera and crying with half her face in the shadow

11. “Monthly meds, baggage I have to deal with it on a daily. No one sees all this – you try and function normally. Or all the doctor appointments or lab work you have to do weekly. They only see a smile faked and ‘it’s OK, I’m fine’ squeaking out.” – Christi V.

medications and pill bottles

12. “My mum took this picture after my 13th surgery for hidradenitis suppurativa. She said I looked at peace, unlike what she was used to seeing. She never saw me sleeping so peacefully unless sedated because I’d be in so much pain otherwise. This was also my last surgery. I got tired of getting operated. My next cyst came a week after this surgery and I figured that I had to accept my life. Been happier since!” – Alraaz S.

woman lying in a hospital bed sleeping

13. “I have type 1 diabetes stemming from antibodies created when I had an infection when I was young. I never like to admit when my [blood sugar] numbers are high. It’s not always about diet, it’s stress, anxiety, illness, insomnia. This was a particularly horrible day. Normal sugars [are] from 75-120 for me. This is deathly high.” – Bailey S.

woman's blood sugar monitor with a reading of 400

14. “Some days my arms hurt so bad the only thing that helps is compression. When people ask what I do all day on my days off, this is the normal for me. Recuperating from the week.” – Marisa P.

woman's left arm and hand wrapped in an ace bandage

15. “I have autoimmune encephalitis, which is my body attacking my brain. In this picture I am in the middle of receiving IVIG treatment (intravenous immunoglobulin) which I get weekly. It is normal to me. I didn’t post this picture on Facebook because even though I thought it was great how my service dog Sonoma was looking so cute, that people would judge me or talk about me behind their backs for posting photos of my real life.” – Cassidy S.

woman lying in bed receiving an infusion with her service dog lying next to her

16. “I do pottery whenever I’m not nauseous and my hands aren’t swollen from lupus.” – Dahlia B.A.

black and white photo of a woman doing pottery

17. “Had a stroke from lupus. These were waiting for me when I can out of intensive care. A great little pick-me-up.” – Amber G.

two stuffed animals and some colorful balloons sitting next to the window in a hospital room

18. “I have lupus and with that comes photosensitivity. I wanted to show that no, I really can’t go outside in the summer and I really am heat intolerant. This rash was through jeans. I didn’t [post] because I don’t want to be seen as a complainer, or attention-seeking.” – Bunny S.

woman with a splotchy red heat rash on her inner right thigh and knee

19. “A flare, tremendous pain everywhere and worsening neurological issues. Fear of dying from it. I hide being sick as much and well as I can. And the emotional pain involved too. But sometimes you just can’t.” – Donna A.

woman taking a selfie while crying

20. “I was in the ER for costochondritis from my rheumatoid arthritis. Sometimes I just think people get tired of seeing my struggle or think I’m posting for attention or sympathy when it’s really to spread awareness about this horrible disease.” – Kel W.

woman's left arm receiving an infusion in a hospital bed

21. “Getting ready for my 14th or 15th surgery probably when they had to rush me to take out my appendix and necrotic right ovary that lupus was destroying. This was after they had to take my uterus out for the very same reason along with terrible fibroids and uterine cysts. I’m not a person who likes to feel vulnerable and I didn’t post it because I didn’t want to show that side of me to the world.” – Joyll C.

woman wearing a hair net and oxygen tube in the hospital

Originally published: March 1, 2018
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