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28 Unexpected Consequences of Posting About Your Illness on Facebook

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When a person posts about their illness on Facebook, oftentimes the hardest parts comes after you click “post” — waiting to see how your friends will react. They might not respond at all, or they might offer “cures” or judgment. Or, they just might give you some words of encouragement and support, or be inspired to do their own research on your condition. Too often, people may just seem to not know what to say at all.

We asked our Mighty community to share some of the unexpected reactions they’ve gotten to a Facebook post they wrote about their illness. Not every post is accompanied by thoughtful, kind comments, so if you’ve been disappointed by your friends’ responses, know you aren’t alone. On the other hand, some people have had some unexpectedly positive interactions that led to more understanding and awareness.

Here’s the thing: If you want to post about your illness, do it! No one has the right to make you feel like your thoughts and experiences aren’t worthy of sharing. Let these responses show you what some people have experienced — then you can decide what’s right for you.

Here’s what our community told us:

1. “People assume I post about my illnesses for attention when in reality my conditions are rare and I’m only trying to raise awareness so no one else has to suffer like I did for 19 years without a diagnosis. I’ve already helped three people that I know of get answers… no telling who else I’ve helped.”

2. “I find people don’t really care, honestly. If I post anything light (friends, family, pets, even food) I get 15+ responses of some kind. But if I post anything about my illnesses (bad day, awareness, venting) it is silence. In the one year since I’ve been diagnosed, I’ve not had a single person share, comment, or ask more questions about my various illnesses. It’s like if it’s not good news, they just turn the other way.”

3. “A guy I dated asked why I share so much on social media, especially photos and updates about my new colostomy, and I was borderline offended by his tone. It seemed as though it was bothersome to him for me to share my strength and resilience on social media, when in actuality, my friends and family are hundreds of miles away, scattered about the country and they like to keep up with me. Guess what? I never stopped sharing, and I’ve gotten so many compliments about my courage and bravery, and I’m raising awareness of Crohn’s disease and breaking the stigma of ostomies!”

4. “Usually my posts are ignored, which I understand in a way, but sometimes I get a comment from a friend or a loved one reminding me they love me and are sorry for what I go through. Those comments can really make my week!”

5. “People have been unexpectedly very concerned, caring, and supportive. Those who haven’t been just try to tell me ways to magically cure myself and try to make me feel guilty for having an illness.”

6. “Some of my healthy friends read the things I post about chronic illness and cry. Some healthy, typical people have an innocence about them, and I forget that. Some people are so sensitive and can’t relate when I am real or raw on the hard days. Their hearts are so gentle, they can’t imagine what we go through, it’s overwhelming for them. I’ve learned I have some pretty amazing friends through all this with the sweetest souls.”

7. “Most people ignore anything I post about my health. I think anything that doesn’t fit neatly into the little box of what most people consider ‘healthy’ or ‘normal’ makes them uncomfortable so they pretend it doesn’t exist.”

8. “I posted some very difficult-to-share pictures and symptoms during Inflammatory Bowel Disease Awareness Week. A few weeks later, I received a private message from a Facebook friend I didn’t really even know in person tell me I inspired her to share the struggles she faces with her chronic illness with her friends and family, and when she did, she received a whole new community of support she didn’t know she could have. I was so happy to know that sharing my story empowered someone else to share theirs!”

9. “Early on in my use of Facebook I actually had a (now former) friend essentially say I was just making it all up because I didn’t want to travel or whatever. She also said I was more or less a hypochondriac… This hasn’t changed how I post about my world because I feel that knowledge is power. Especially when you battle something ‘invisible’ to the world at large. People need to understand that not everyone is as healthy and normal as they appear.”

10. “I’ve come to terms with my illness for the most part, at least to the point that when I post about it on Facebook I either keep it vague or make a joke of the situation, and no matter how lighthearted and comical I try to portray my illness, there will always be someone who reacts with a sad emoji.”

11. “Bullying, rejection, ignorance, silence. Remember it says more about those people than it does about you. I’m beyond caring anymore. Don’t any of us let these reactions from others bully us into silence.”

12. “People thinking they’re suddenly Facebook doctors, saying, ‘Have you tried yoga? I bet acupuncture would work. Oh you can’t stay awake more than an hour? I bet you’re sleeping too much, try getting some exercise!’”

13. “I really like the connections I make with others who have chronic illnesses. I feel less alone, learn a lot, and feel helpful sometimes. I also think some people I know begin to see the issue as more real than before. I also think I felt ashamed and embarrassed before. Now I am more open about my illnesses and am happier, more at peace.”

14. “Interestingly enough, people close to me either message me to see how I’m doing and send me positivity while others tell me to suck it up and be positive. ‘At least it isn’t cancer!’ they say. Makes me so furious! I talk about it because it is my life and it’s real. It helps me process.”

15. “I learned the people I thought cared about me the most simply unfollowed me because I ‘post too much about my illness.’ However, I did find support from some unlikely sources, including those who I considered acquaintances (who have now become friends) and other patients I met online.”

16. “Mostly I feel ignored. Like I’m standing in a crowded room, saying ‘I have a chronic illness’ at a normal level and everyone is already having their own conversation so they don’t hear me. Except my mom. My mom hears. My mom is kind of my rock but like a cuddly, loving rock.”

17. “I have only posted a couple times but one of the really positive things that came from it was someone Facebook messaged me and started asking a few questions about CRPS and then told me how courageous I was to be dealing with this in the positive way I was and how kind it was if me to answer her questions. It was nice to have someone ask questions before judging.”

18. “1. The suggestions for ‘cures’ for an incurable disorder came in droves. 2. I became an admin and an advocate and found a new purpose in reaching out to others. (Incidentally, that’s when friends started realizing I actually was kind of an expert about my illness and quit sending inane internet cure suggestions.) 3. Amazing reactions from people I’ve touched by sharing my story that remind me exactly why I do what I do and overwhelming support from some I least expected it from.”

19. “It’s really not worth it for me. I don’t share details in person or on social media for the most part (unless asked). My extremely close friends and close family know the entire picture. It’s very difficult to understand unless you live this life. Besides, I like to talk about other things when I’m with people. It keeps my mind in a more positive place and it helps me forget, if just for a bit, how all consuming chronic illness is.”

20. “For the most part I get so much love and support when I post about my life with Crohn’s disease. The biggest issue is always my weight, and I’m honest and say when I’m struggling. However, it kills me when people think they are funny when they respond with wishing they were that thin or wanting to transfer their chunky thigh meat to me… It’s not funny, I don’t wish Crohn’s disease and malnourishment on anyone.”

21.I’ve been told people will get tired of seeing me posting about what I’m going through. Well, I don’t care if they get tired of it, I’m trying to raise awareness!”

22. “I’ve heard so many horror stories of others so I’ve always been kind of apprehensive about sharing. So the other day I just posted something that included a couple new diagnoses that most had no clue about and the response was surprisingly positive and supportive. I was almost holding my breath ready for someone to say something negative, but the opposite turned out to be true!”

23. “Straight up being ignored has been much of my experience. I post away anyways because this is my truth and my life. I choose to show the good and the bad on my social media rather than pretending my life is perfect. I’m sure I’ve alienated many people, but I’m learning the people who will support me through the worst experiences I’ve ever gone through are the people I want to keep around and do the same in return. I’m happy I know who will and won’t step up in my life. It hurts but I’m still happy I know.”

24. “In the beginning, certain people said I was just doing it to get attention. Those people are no longer my friends. Some people were informed by what was said and found their own health issues because of it.”

25.I have found more support from former neighbors and complete strangers on Facebook than my family and many ‘close’ friends. And then there’s the one ‘friend’ who tries to make it a competition!”

26. “I’m really just an advocate for my daughter’s chronic illness. Everything so far has been positive. I won’t hesitate to get rid of any negative people over it though. Occasionally I do see people bombarded with miracle ‘cures’ for type 1 diabetes from well-meaning people, but it hasn’t touched us much yet.”

27. “I had a friend of mine, who I thought understood because of her work in the medical field, tell me I needed to basically stop being lazy. According to her, I was not getting enough fresh air and my attitude wasn’t positive enough. She then jumped all over me when I informed her that I found her unsolicited advice to be rude. We haven’t spoken since.”

28. “A friend from high school commented on what she could do for for me. Sweet offer but she doesn’t live close. I thanked her and joked, if you ever find a magical healing unicorn send it my way. Two days later a pink fluffy unicorn arrived in the mail. I was wrong. She helped a lot even from far away!”

Originally published: March 30, 2017
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