20 Photos People With Chronic Illness Want to Post on Facebook, but Don't
Deciding whether or not to open up on social media about your illness isn’t always easy. Should you show people the reality of what you face every day, in hopes of raising awareness and understanding — while risking the fact that people may not respond kindly, or at all? Photos, in particular, can reveal truths about your illness your Facebook friends aren’t expecting, and it’s understandable to be hesitant to share.
But living with a chronic illness takes strength anyone deserves to show off. And by seeing photos of what chronic illness really looks like, hopefully your friends and family can begin to understand what you’re fighting every day. So we asked our Mighty community to share a photo they wanted to post on Facebook, but didn’t. Though many responded that they didn’t post their photo on Facebook because they didn’t want to seem “attention-seeking,” all we see in these photos is courage — the courage to live with chronic health conditions, fight for treatment and share your experience with others.
Here’s what the community shared with us:
1. “Walking for the first time after bowel resection surgery. I don’t like to share all the details about my disease on social media. The hospital look is also not my most attractive look, haha.”
2. “The first time I went to the university with my new cane because I have arthritis and fibromyalgia. It was the first time many people saw me with it, walking with stiffness and pain in my face. I had to endure many, ‘But you don’t look that sick,’ and, ‘Aren’t you a little young to have those conditions?’ But I tried to smile all the way through it.”
3. “Me, not too long after my diagnosis of sarcoidosis. I was on 60 milligrams of prednisone a day and wasn’t due to taper off for a while… I’m off prednisone now and on methotrexate. I puke and have a hangover nearly all the time, migraines and so much more. Weight is slowly coming off and I have a way to go but I’m feeling and looking better. Well, feeling better to a degree.”
4. “At home draining my stomach contents that I can’t digest, and getting nutrition through my veins. I didn’t post this because people may be uncomfortable seeing a bag of bile (even though it’s my norm for survival). And that people may think I was seeking attention/sympathy when really this is just what I go through every day except I usually cover it up.”
5. “I was in the ER because my GI doctor thought my gallbladder was about to burst. I wanted to post it on Facebook because I thought this picture was artsy, but I know I would be judged and people would think I was only posting it for attention.”
6. “I didn’t post this one because the night before I went out with my sister to a Spanish club. (I don’t normally go clubbing.) I live 300+ miles away from her and when she came to visit I wanted to take her out. She knows how to dance very well to Spanish music and I wanted her to be in her comfort zone. There’s a lot of hip movements with cumbias and I tried to keep up. The next day I was in the ER with a sickle cell crisis and at the time hadn’t had my diagnosis of necrosis of the hips. I didn’t post because I felt embarrassed and irresponsible. Like I brought it on myself. We had posted a selfie before our night out, too. I just wanted to show her a good time. I wanted to feel normal.”
7. “This is me feeling proud about using the bathroom by myself at the hospital with a high pain level and weakness. I’m usually pretty open about my illness online, but I’m never too detailed.”
8. “It took all my energy and strength to get it together to host my son’s 14th birthday. When I arrived at the event there were about 50 steps to climb and it was so hard. But I had people with me and didn’t want to appear weak. We had decorations, cases of drinks, snacks, etc. etc and when I got to the top I was scared I’d pass out. But here I am standing up smiling along side him.”
9. “Took this photo at a low point in my search for an additional diagnosis. I was feeling so sick, yet the cause of my stomach challenges was still unclear. I was trying to remind myself through taking the photo that my low mood and physical pain were both real and I would figure this out.”
10. “Dealing with chronic migraines makes you stronger than you ever thought you could be… first pic relying on my Imitrex and ice pack and second picture is what I present to the world every day, whether I’m up to it or not I put on a smile.”
11. “My first time going out in public after surgery to remove my thyroid and lymph nodes due to metastatic cancer. I wanted to look back on this picture years down the road and say ‘I made it through that’ and compare how far I’ve come. I didn’t post it because I didn’t want people to think I was attention seeking or looking for sympathy. I also didn’t want to hear more of ‘Oh, thyroid cancer is the good cancer’ and having all the struggles that accompany it dismissed.”
12. “It’s 11 p.m. in this picture. The baby hasn’t been changed, the dogs haven’t been let out and no one has eaten breakfast. I think diabetes is an overlooked, highly stigmatized and misunderstood illness. I am not overweight, but I still suffer devastating highs in my blood sugar. Doctors and television make it seem so easy to control with diet and exercise, but sometimes even that doesn’t do the trick.”
13. “This was my first time out with my power wheelchair. I was thrilled to be out to enjoy my newfound independence. At the time, I was hesitant to share about it because it can be hard to explain how having chronic illness can cause variable mobility issues and why someone like me benefits from part-time wheelchair use. Turns out, people can be very understanding — explaining these things wasn’t as hard as I thought.”
14. “This vacation was amazing! I didn’t mind using my walker every day, but… none of my friends or family have seen me use it yet. It’s still very new. I got the walker for the vacation but I couldn’t believe how much it helped with my mobility! The reason I didn’t post this pic is because I am still wrapping my head around the fact that I own and use a cane and a walker.”
15. “My very swollen, very painful endo belly. Every time it shows up it’s a constant reminder of the pregnancy that may never come.”
16. “This is a picture that was taken last year during a five-week hospital stay. I was happy that I finally got a PICC line after being poked 24 times by IVs — the majority of which were failed attempts or resulted in infiltrated veins.”
17. “I know I should be happy that the steroids helped me to feel better and that I’m not in the hospital etc. etc. etc. but guess what… I still hate what this disease and the meds have done to my physical and mental well-being! So here it is… A picture taken at work some weeks ago. I’m a first grade teacher in a low income neighborhood and a dear friend who is a published author came to speak to my kiddies about writing and what it takes to become an author! It was such an exciting day and a wonderful experience for my students and I am sure you can see by the huge smile on my face… and yet I didn’t want anyone to see this because of how large and ‘distorted’ I look! Thankful and hopeful but would love to look like my old self!”
18. “Living with not having a diagnosis, with constant nausea and pain and being handed medication after medication only for it to not work. This is just what I carried with me on a day to day basis. Taken shortly before I was diagnosed with gastroparesis.”
19. “Once I reach [my goal weight] I can get my nose tube pulled! I haven’t let Crohn’s disease beat me yet.. not after six abdominal surgeries, not after all my blood transfusions, not after my ileostomy surgery, not after my 21+ year journey and not after my most recent two week stay at the hospital where my specialist is (a five-hour round trip daily for my family). This is only a moment in time… I got this!”
20. “This is when I had to do a MRI after 8 p.m. due to chronic pain in my hips, lower back and legs. I didn’t post it because I wasn’t sure if others would consider it as seeking attention. I have learned that bringing awareness to others helps them understand a bit more and just how many others have come to support me, and like to see updates on my health. Every so often I’ll get the, ‘You’re so young though,’ but it doesn’t bother me too much anymore.”
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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