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 3-hour nap. Little things can cost you a single spoon, or unexpectedly rob you of five instead. They 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 support groups can be a godsend. They are filled with people who understand. People who can offer everything from a great specialist to day-to-day survival tips to someone to talk to when insomnia hits at 3 am. You are no longer lost in the storm; there are others to hold your hand. Others to tell you that “yes, that is a ‘normal’ symptom”. Or “no, it’s not crazy that you want to throttle your mother/sister/in-laws/friends when they say insensitive things or wonder at the validity of your condition.”
This sense of community and support is priceless to many. 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 support groups.
The Downsides of Facebook Support Groups
The sense of community means that people want to share everything that they believe no one else would understand. From memes about chronic conditions to horrific experiences to the suckiness of having a GP that 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 will feel depressed. We’ll feel defeated, 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 becomes overwhelming.
We’re All Different
A lot of people forget that there is individuality, even within the same condition. Some people might not do so well on a particular 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 admins 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 that we are all on our own individual journey. Pushing someone else is not going to serve anyone.
You Are More Than This
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, bad days, you are 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, your vitality, your smile, your laugh, your determination, and your soul. These all add up to so much more than just the state of your body.
Are Facebook Groups For You?
Facebook support groups may be your saviour, and if so, more power to you. All I ask is that you share the good things. Share the inspiring images, the beautiful quotes that make you shine, and your successes. Share them 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 Facebook support groups drag you down, or leave you feeling icky, that’s ok. I’m here to tell you: you are not alone, and it is perfectly ok to leave them, or hide them from your newsfeed. 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 that I follow. I 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.