Updated: Jul 16
Dear RARE Friends,
Having a rare disease and not being diagnosed until I was a teenager means I am surrounded by people that do not have chronic illness in common with me. I have never knowingly had a problem with this, I’ve always been a bit different and had to do things differently or not at all because of my health and nobody has ever questioned it. It’s quite embarrassing that although I’m doing a psychology degree it has taken a global pandemic for me to realise that prioritising my physical health is second nature to me but is not something other people may be willing to do.
Seeing big groups of people in the park, or photos on social media of people having house parties when hundreds of people were dying everyday filled me with rage.
It felt like a kick in the teeth, to me and everyone I knew being careful or shielding. I was so angry. These people had been asked to prioritise their own and others health for a few months and they couldn’t even do that. But it wasn’t until my Mum said “you might have done the same if you didn’t have FA (Friedreichs ataxia) to think about” that I really started to think. I, and other people like me are forced to prioritise our health everyday of our lives, it is not a choice.
I am not saying that I am used to living my life in quarantine; quite the opposite. I have missed normal life more than I can say and having some routine and independence back is a welcome thought. But, prioritising my health is something I do everyday, I wake up on a morning and how I feel affects what I get done, plans I make revolve around my health, what I do for fun is affected, as is what I do to relax and on and on. I am used to being careful with myself because the consequences aren’t worth it.
The more I think about this, the more obvious it is to me that barely anyone else I know has to consciously prioritise their health first. They can stay up all night finishing an assignment and still go to a 9am lecture because they’re able to prioritise university first, they can get drunk and sleep in a field for four consecutive nights because they’re able to prioritise fun experiences first. This is not me saying I can’t do well at uni or have fun experiences; they just can’t be prioritised above my health.
I’m not sure why it took such extreme circumstances for me to feel segregated from everyone else, maybe it was the one rule for the majority and another rule for the high-risk group or maybe it was the physical isolation that made me feel emotionally isolated too, or maybe I just had too much time to think.
I just know that while everyone was talking about how great it would be going back to ‘normal’ and not having to constantly prioritise their health over everything else, I was becoming more and more aware that ‘normal’ would never exist for me, and the more my disease progressed the bigger priority it would be.
The way my brain works is I feel very strongly about something for a couple of days and then I almost forget about it. This is what happened here. I twisted, complained and cried about the unfairness of it all but then just moved on. There is no point dwelling on things I cannot change, especially when on reflection I wouldn’t change my life even if I could.
One thing that I will always feel strongly about and never forget is that having good health is a privilege that people need to acknowledge.
Written by Georgia Hart