a little cartoon creature is sitting on a cloud singing 'don't wanna be all by myseeelf' The caption says, 'Why is community so important when you are chronically ill'.
Why is community so important when you are chronically ill?

When I was first diagnosed I only had one person in my life I could talk to about being chronically ill and at the time I avoided doing that because I felt I didn’t have the right to complain about my lot because they were so much worse. 

It wasn’t till I became part of the Instagram community that I really saw the benefits of not going it alone. But how do we find where we fit and what makes a good community?

It’s something that I have discussed with guests on the podcast more than once. When you first get sick it’s only natural to turn to the internet for answers, especially when doctors aren’t forthcoming with information about how to live with your new condition

The problem with this is it often leads you towards Facebook groups and articles that are frankly bitter. They are written by people who have every right to be angry, but as someone who is newly diagnosed it often leaves you feeling like your life is over.

That’s not to say we shouldn’t be realistic about the hard parts, sometimes this just sucks and it’s ok if you feel that way. But it doesn’t have to mean the end of your happiness. You can be sick and still find joy. That concept wasn’t something I got until I joined the chronic illness community on Insta.

A good community will uplift and empower you. Being part of this community has done so many things for me and below I am going to break that down for you so that you too can create a space for you to be unashamedly disabled and proud.

This is such a big one for me. I will never stop shouting about how important being a part of the community is but I also wanted to show you real world examples of how it helps. 

So strap in, because this is an unashamed love letter to the chronic illness community!!

I don’t know about you but some of my best friendships are with people I’ve never met in real life. The connections I have made in this community without a doubt saved my life. If someone had told me that the biggest thing I could do to help myself was to find a community that got me, I would have stared at them with mouth open wide but here’s the thing, it was.

Becoming part of the community not only gave me a group of people willing to listen to my struggles and not try and fix me but it also:

  • Armed me with the knowledge to stand up to my doctors and ask for important tests that improved my quality of life.
  • Taught me crip hacks like using a heating pad to get your veins to come to the surface if your nurse keeps jabbing you with no luck! (thank you @im_still_here_sgb for that gem!)
  •  Encouraged me to embrace mobility aids which ultimately gave me back some of the autonomy that I desperately craved. (thank you @littlepineneedle for #BabeWithAMobilityAid which to this day is my inspiration)
  • Taught me that the world being inaccessible wasn’t my fault and that no matter what I am worthy of basic human rights and should not be made to feel like an inconvenience because of it.
  • Taught me that my disability is damn hot (thanks in no small part to @itsandrewgurza and his podcast Disability After Dark)

If you don’t follow the people I’ve mentioned here go check out their work on Instagram!

This barely scratches the surface of what I have learned and am still learning even now. So no, I am never going to stop shouting about how amazing this community is because it absolutely saved me and if you lean in to it, it could save you too.