These guidelines might help you figure out the right approach for how much you share — and how much you hold back — on social media.
When you have a chronic health condition that takes up a lot of your brain space, it can be challenging to decide how much of your health journey to share with friends online.
On one hand, it can be helpful to share what’s going on in your life and feel more connected to people, and on the other, you may worry that it’ll turn people off if you share too much.
There are no perfect answers or formulas for how much to share and how much to hold back, but you can use these guidelines to help you to determine the right approach for you.
Know your audience. If you have a general Facebook page for your friends and family, you’ll want to approach things differently than how you would on an Instagram or TikTok account specifically dedicated to discussing your health condition.
Both can be helpful.
On a general page, filling it with nothing but health news can be too much for readers, but if you start an account about your condition (such as @wee_red_spots or @chronicallyillxo), the people who follow it will naturally have an interest in reading all about it, and many will share similar health issues.
Pictures of body parts — particularly when those body parts are inflamed, bleeding, flaking, scabbing, scarred, etc. — can just be too much for some viewers, and coming across those types of pictures unexpectedly on social media can be upsetting.
This isn’t to say that you can’t share pictures, but you might consider providing those photos in links or comments with an explanation of what the viewer will see, or just in groups dedicated to your condition.
Or, if you feel more empowered by sharing photos freely, just understand and accept that some people will hide, unfriend, or unfollow as a result. It doesn’t make them bad people, and it doesn’t mean they don’t care about you. It just means we all have different sensitivities.
Too often, we filter our lives through a social media lens. We think everyone else looks put together and shiny and we need to, too.
But this isn’t helpful to anyone. We all go through good times and bad, and you’re under no obligation to pretend you’re doing well if you aren’t.
It’s OK to be human, to write or talk about your problems, and to ask for support. Real friends care and want to know what’s going on in your life.
On the other hand, if the vast majority of what you share online skews negative, you again run the risk of people tuning out.
When possible, share not only your health challenges but also whatever little joys you find — whether that’s happy news, pictures of nature, recipes you love, silly memes, commentary on news, or holiday memories… consider challenging yourself to find positive things to think about and post about each week.
Social media should be about relationships. If you expect people to read your updates and comment on the things you post, then it should be a two-way street. Make sure you’re also commenting and reacting to your friends and family’s posts.
Sharing about serious health conditions online can sometimes have unintended consequences, which is why some people choose to either use a pseudonym or just a first name.
Consider that future employers, admissions officers, or even dates may see what you’ve posted, and then decide whether or not that’s the first impression you want to make.
Even in this area, there are varying approaches that work depending on your goals. Chadwick Boseman kept his cancer diagnosis extremely quiet, telling no one at Marvel and Disney, because he hoped to star in Black Panther 2. Other actors like Selma Blair, Christina Applegate, and Cara Delevigne have been very open about their health struggles.
Sharing online and getting feedback from people can be great, but it can also be unsatisfying if you’re expecting social media to function as your therapist.
Rarely will the encouraging sentence or two that most people write be enough to heal the psychological and emotional wounds that a chronic health condition can create.
If you find yourself looking for real help in an ongoing fashion, consider looking for a professional who can address your needs one on one or in a support group. If what you need feels more temporary or doesn’t rise to the level of therapy, consider that a phone call to a friend will probably feel more personal than typing.
Sometimes you may post something extremely personal and get few responses. You’re left wondering “Is everyone ignoring me or is it the algorithm? Have people read what I wrote?”
Often, it means nothing — it really is that your post didn’t show up in people’s feeds often enough and that’s why you’re not seeing reactions. Or whomever you expected to comment just missed it. Or that they don’t understand how to turn off notifications and they think if they comment, then they’re doomed to get 20 pings with every other comment in the thread.
On the other hand, sometimes it does mean that a person you care about has hidden your posts or is intentionally not reading or commenting — and that could mean the person isn’t a very good friend, or it could mean that friend is at emotional capacity.
It’s hard to know what someone has going on in their own lives on any given day, and whether they’re able to give attention to someone else’s struggles if they’re going through their own.
Give the benefit of the doubt as often as possible, and if it’s really weighing on you, then just privately ask outright if there’s a reason. Frequently, people aren’t even aware they’re not seeing your posts, or that it matters to you that they’re not commenting.
You can’t cater to everyone, so there’s no ideal way to share updates or explanations about a chronic health condition online.
But if you become more aware of your habits and posting patterns, you may be able to meet your own needs and keep your friendships healthy.
Medically reviewed on April 19, 2023
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