A few years ago, during an innocent conversation at lunch where I was talking about something invariably shit that happened to my body, that I “think about your health too much’. And it’s something that has stuck with me ever since. Feelings of shame and guilt and fear swept over me – as they often do when people who don’t understand what it’s like to live with a long-term illness start getting all judgmental about something that they have no real understanding of. Especially if they only see me on one of the rare ‘good days’ where I’m able to leave the house. ⠀

I’m kinda sick of having to defend myself on this point – sometimes even to people who help me with my treatment. There’s something inherently unbalanced in the conversation when you’re forced to defend your ‘obsession’ with your health – and I know this has definitely played a role in my constant over-explanation whenever I’m in a situation where I need people to understand the impact of my illnesses on what I’m doing (*remembers an old boss who told me that other people have it worse than I do and I had to cry at twice until he let me work from home as he had already told me I could but then changed his mind*)⠀

How can I not think about my health all the time? It impacts every single tiny thing I do. From the small things like how I curl up in bed, how I put my foot on the ground, balancing whether I have the energy to get food or go to the loo, or whether I can watch tv under a duvet on the sofa that evening or stay in bed. And then there’s the big things, like work and social stuff. You try to forget about it.⠀

My life is a constant balancing act. I’m terrible at maths but I’m an expert at body calculations. How many weeks do I only leave the house for medical appointments before I can go to the cinema? Am I able to do a 3-minute walk as part of my rehab today or do I need to try and write? If I put my plate in the dishwasher now will I have used my energy to try and help do something this evening? ⠀

My health isn’t something I have the luxury of ignoring. I feel shit ALL THE TIME. It’s a safety issue, both physically for the constant bloody EDS injuries (why, yes, I am super cool and glam, thank you) & looking after my energy so I don’t crash.⠀

I am so proud of everything I have managed to do with my life, and the slow work I do every single day to try and function. But I’m only able to do that because of this focus on my health. So, to all those people who think that I, or anyone else with chronic illness are just far too obsessed with their health. I say suck it.⠀

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