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Why I Left Almost Every Chronic Illness Support Group I Joined on Facebook

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When you have a chronic condition, it’s all about the little things.

Little things can take you from bouncing off the walls to needing a three-hour nap. Little things can cost you a single spoon or unexpectedly rob you of five instead. Little things can take you from surviving to really thriving.

This is why I left almost every support group I joined on Facebook.

When you are first diagnosed with a rare condition, Facebook groups can be a godsend. They are filled with people who understand, who can offer everything from a great specialist to day-to-day survival tips to someone to talk to when insomnia hits at 3 a.m. You are no longer lost in the storm. There are others to hold your hand and tell you yes, that is a normal symptom, and no, it’s not ridiculous to want to throttle your mother/sister/in-laws/friends when they say insensitive things or wonder about the validity of your condition.

This sense of community and support is priceless to many, and I would never dismiss the value of it, especially in those early days.

But at the same time, there are the downsides that eventually led to me leaving many.

The sense of community means that people want to share everything they believe no one else would understand. From memes about chronic conditions, to horrific experiences, to the suckiness of having a general practitioner who just doesn’t get it, the “share” button gets pummelled.

Unfortunately, the downside is that all of this information feeds into our brains when we see it. The more negativity that shows up in our feeds, the more likely it is that we might feel depressed, defeated and like every single day is a battle. When you put this on top of your daily struggles and tasks, the temptation to just collapse in a heap and give up can become overwhelming.

A lot of people forget there is individuality, even within the same condition. Some people might not do so well on a medication, even if you did. Some people might prefer to take on more natural treatments and types of healing and find success, even if you think it’s a bunch of woo-woo rubbish. Despite wonderful administrators who work hard, posts can often deteriorate down into the Facebook equivalent of an all-out brawl over these issues. People get so passionate about what works for them that they forget we are all on our own individual journey, and pushing someone else is not going to serve anyone.

There is also the tendency to start identifying, and often over-identifying, with your condition. We all have pride in what we can achieve and feel a greater connection to those who have faced similar circumstances. But when you post daily updates on symptoms, medications and bad days, you might be constantly focusing on your condition. Where you focus is where your energy goes, and chronic illness is a black hole for energy, constantly sucking up every little dreg.

But darling ones, you are so much more than your illness. You are just as much your love, vitality, smile, laugh, determination and soul — and these all add up to so much more than just the state of your body.

Support groups may be your savior, and if so, more power to you. All I ask is that you share the good things, the inspiring images, the beautiful quotes that make you shine and your successes just as often as your crummy days, if not more often. You never know when your positivity can turn someone’s day around.

But if you feel like they drag you down or leave you feeling icky, I’m here to tell you: You are not alone, and it is perfectly OK to leave them or hide them from your News Feed. This is your life and your body, and what you choose to put into those is completely your choice.

Nowadays, I choose to recognize the unique path I follow, offer support to those who feel they need it and follow only pages and groups that inspire and uplift me. I remind myself every day that I am so much more than what a piece of paper says I have, and I chronically thrive.

And now life seems so much sunnier.

Follow this journey on Sage Therapies.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: March 1, 2016
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