Girl in bed - lessons from the losses

A scrapbook of thoughts from the past few months I felt like sharing today <3

I know for much of this year I’ve been quiet on here, over analysing every attempt at jumping back into the game. Always caught between my health, not hiding and not letting it define my life. It’s a balance I know there’s no right answer to and yet, sometimes it’s easier to just be silent.

And that silence, can come from fear.

A few months ago, I and many in the chronic illness community online were rocked by a very inflammatory daily mail article. I won’t go into too much detail but plainly, it accused (particularly young girls online) of revelling in their illnesses, trying to one up each other and crafting a whole competitive identity of being ill. It was one of the most abhorrent articles I’ve seen in awhile, and that’s saying something.

I so carefully craft my life based on the experiences that moulded me as a young teenager. Always making sure to speak articulately when describing my symptoms, having hobbies and identity’s outside of them, as hard as that can be at some moments to maintain. It’s all about making yourself palatable, crafting a believable version of yourself because the reality is messy, and some people don’t want to have to sort through that in their heads.

I’m now 21 and still very much finding my feet on not only how to be a young girl, but one who has the body of what feels like an 80 year old on a good day. I feel a certain protectiveness over the community that nurtured me through a difficult and isolating time.

I cannot describe to you what spending your most formative years in this kind of a body can do to you. I cannot tell you the right way to deal with it. And neither can anyone else. Half the people shown in that article simply came online to for once, not have to explain themselves, prove themselves and a lot of them are so very young.

Not everyone owes you, a stranger a multifaceted identity. Yes it’s vital to foster that, but just as some peoples pages offer a highlight reel, others are a venting space, a safe space, a space where for once they can let down the veil of uncomftability. I will always defend that, so yes us #spoonies will never stop talking, we’ve made a community out of something that could have stripped us of all human connection, and I’m proud of every single person that not only decides to get up everyday, but to help others when they don’t feel like doing the same. And I’m happy to finally come back with all parts of me, a messy little patchwork girl ☾