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17 Things to Consider If You're Debating Whether to Post About Your Illness on Facebook

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To post or not to post…

Sigh. It’s a thought that may cross our minds several times a day. Should I share this moment with all my family and friends? What will they think? How will they respond? 

If you have a chronic illness, deciding whether or not to post about your health can be especially tricky. There can certainly be benefits to sharing online – raising awareness, helping others feel less alone – but, unfortunately, your posts may not always get the response you’d like. Some may accuse you of “attention-seeking” or “complaining,” and in some cases, this might deter you from continuing to share. These pros and cons can quickly complicate the decision-making process.

Of course, everyone is different in how much information they’re comfortable sharing about their health. Whether you post frequent, personal updates or simply share an educational article every couple of months, you should do whatever you feel is best for you. But if you feel stuck, and just aren’t sure whether or not to post your latest health update, we’ve got you covered. We asked our Mighty community to share what factors help them determine when to share (and when not to share) about their illness on social media. Everyone has a different perspective, but hopefully some of the following responses can offer you a little guidance if you’re feeling unsure.

Here’s what our community shared with us:

  1. I post in the hope of trying to increase awareness and understanding, and not just for disease basics but also so my family and friends and others can maybe understand why their friend or family member who also is battling a chronic condition did ‘that,’ whatever ‘that’ is, such as why a person with a chronic condition keeps canceling plans or does something different than how he or she did it before.” – Sarah N.
  2. I think it is a double-edged sword. Some say you post too much and are attention-seeking, some say if you don’t post it others don’t know what you are going through. Either way someone is going to critique. So it comes down to being comfortable in yourself, how much you want to educate your friends and family and the level of crap you can tolerate from others. We all have to balance those things to our own level and find our own comfort level with our own disability first.” – Michelle J.
  3. I kept silent for five years, and then posted a 30-minute video explaining my illness. It got 25,000 views. I had an overwhelmingly positive response and people got a more realistic view of my abilities. When I say that I can’t do something, they now understand why. It’s weird being told I’m ‘brave,’ ‘inspirational’ and ‘strong.’ I’m just trying to get through the day the best I can, just like everyone else.” – Debby R.B.
  4. I post a lot! I didn’t use to, but then realized that to bring awareness to my disease we all needed to start having a conversation… so I post in the hopes of educating others and to decrease the stigma surrounding women’s problems and talking about them.” – Kristi E.
  5. I don’t post much. The more I have posted, the less interaction I get. No one seems bothered. I have joined some brilliant support groups and post more there. One of them is so amazing I know I can post anything and only get love and support. Posting it on my own page just leads to being ignored or I get the whole ‘Oh yeah, me too’ messages. Or ones telling me how to ‘cure’ myself. Posting in my FB support groups means less stress from reactions and the knowledge that I am talking to people who understand, even if they are from the other side of the world. It also means you get some fantastic advice, empathy and you can learn more too.” – Laura K.
  6. I typically don’t post on FB. But when I do, recently anyway, it’s about my health. Do I share every detail? No. I try to make light of my situation and show that I’m still me underneath my disease. It’s encouraging to have so many people respond. Until I opened up about my disease on FB I had no idea how many people were praying for me, how many others were also suffering, and how big of a support system I have.” – Meghan W.
  7. I struggled with it for a bit, but then I thought that maybe someone else could benefit from my posts and knowing they are not alone. I try to make sure it’s not all I post – but I will post, usually when in a bad flare because the post puts me in a better mindset of helping others rather than feeling sorry for myself.” – Tasha C.
  8. I post mostly on my Instagram but hope to one day reach out more on Facebook. I’ve started sharing articles from The Mighty or chronic illness pages to help spread awareness and hopefully educate. One day I’ll be ready to post my own life with them.” – Lyssa A.
  9. I have started posting more recently as I am becoming more knowledgeable of my conditions and how they affect me. It’s mainly for awareness but also to remind people that young and healthy-looking people can have physical difficulties.” – Hannah M.
  10. Honestly I post any time I feel like it. Doctor updates, when I have a hard day, when I overcome one of the hardships brought on by illness. People who aren’t OK with something that is my daily life don’t need to be part of it. Took time to get there but it’s better for me this way.” – Birch C.
  11. I post whatever I want, when I want and it’s well within the Facebook guidelines. I set up my Facebook account. I am responsible for my account. I choose what I share. I cannot make others look at it. They can choose to look at it or scroll on past. Everyone who knows me personally (and even those friends who live inside the interwebs) know about my chronic pain and other health issues I have. They ask questions. I have days where I just want to exist and I’ll let those closest to me know I am having a crap day and just want to scroll through Facebook and not talk to anyone. They respect my privacy. The key is to do what you want to do in the capacity that you are able to. Whether anyone listens or not is not your worry or problem. Sometimes posting about your illness or conditions on your social media account can be similar to writing in a journal, except every friend can read it.” – Sherrie P.
  12. You’re constantly in this never-ending loop of being able to participate in life with friends and having to lay low because that brick wall just came up and smacked you down… again. It’s in those down times that I post to remind people that I might be down, but don’t count me out just yet.” – Pat H.
  13. I rarely post specifically about my personal experience, although I share things about my illness on a fairly regularly basis. I think I am afraid of being repetitive or annoying – or maybe no one will care. I am often inspired to write and share more about my personal experience when I hear about people having the same illness as me (friend on social media or not). I think I feel more like sharing when I feel like it might help someone else and isn’t just me complaining about how hard it is to have a disease.” – Jennifer G.B.
  14. I was diagnosed with fibromyalgia in 2010. At my work, people started saying that I have ‘some mental disease’ unheard of. I also did not know much about the condition myself. It was the first time hearing that this illness existed. My boss spread the rumor that I am ‘crazy,’ along with ‘friends’ and colleagues. It was a painful experience. I was ashamed at first, but I realized that if I do not tell my story, someone else will. And they will most likely tell their own version that suits their agenda. I never want my daughter to be told that her mother is ‘crazy’ by people who are ignorant and self-centered so much that they feel it would be too much of an effort if they asked you or found out what you are going through. I decided that I was going to tell my story, on my own terms. To let my daughter know that I am a strong woman who fought each and every day so that I could be a good mother to her and a good wife to her father, and also be a productive member of society. Most importantly, so that she knows when she grows up that it’s OK to put yourself first sometimes, to rest, to recover and to heal, if that’s all your body is able to do. You should never have to explain yourself to anyone who doesn’t even care why you are unable to get out of bed, or take a shower. Do you! God knows your heart, and that’s all that matters!” – Ndivhuwo R.M.
  15. I ask myself, ‘Is this going to either educate someone or help someone understand me better?’ Usually does the trick. Sometimes I do it because part of me is tired of holding it in though.” – Georgie R.
  16. I try not to overthink it. Illness is just a part of my life. If I never talk about it, it stays invisible. So, I talk about it whenever I want.” – Sara W.
  17. I used to worry people would think I was whining and complaining too much. Here is the thing. They do. But I have to vent sometimes. No one responds most of the time. I don’t care what they think. I just need to get it out of my system. We all post stuff about our lives. This is mine. This is my reality. I can’t keep pretending for other people’s comfort. When good things happen, I post them. Those tend to get response. When I am frustrated by my illness, I post it. It is mostly ignored. That is OK too. I post for me.” – Jennifer C.
Originally published: May 25, 2018
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