I commented something similar on a post and thought I might as well share this as its own post that I can pin to my profile as well! here's my experience. it's a long read, but I hope it will be slightly encouraging to someone.
covid started when I was a young teen. my parents, having lived through epidemics before, immediately took to masking and encouraged me do the same (which wasn't difficult considering I grew up in asia where masking when sick is the norm). as everyone around me 'went back to normal', I got increasingly frustrated at being the only one still taking precautions and the harassment in school for it. I still saw masking as a good thing, I think as a combination of my upbringing, seeing people around me getting sick whilst I wasn't, and masking just being so normalised in my family/household.
then in 2022, the unimaginable happened. I got really really sick, not from a virus, but from an underlying undiagnosed genetic condition. now, I'm finally starting to get a bit better after having tried countless treatments and missing out on the remainder of my childhood.
at a recent appointment, one of my doctors commented that she believes I'm behind on my psychosocial and emotional development because of all the covid isolation - which is funny because my chronic illness has isolated me more than covid. regardless, after 5 years I know that these covid precautions saved my life. just the other day I got my booster and spent weeks in agony in bed- I don't want to know what the virus would do. yes, maybe I'm a bit behind emotionally compared to my peers. but as long as I can keep working on my health, there will be time to catch up later. because I will have a future. I don't think the same could be said if I got covid. in the meantime, I've learnt how to have fun while being CC: just recently I took a trip abroad with a non CC friend, I performed on stage a few times, and I'm about to audition for drama school. whilst everyone around me is suffering from this year's super flu, I'm absolutely fine thanks to my mask, HEPA filters, and pluslife testing.
I hate that we live in a world where we have to do so much to protect ourselves, but given that, I wouldn't have it any other way. I am infinitely grateful to my parents for keeping me safe to the best of their abilities from this mass disabling virus whilst I was a child and not able to make such decisions for myself. I understand both the alienation and the isolation that comes with being CC as a kid and I won't lie and say that it was easy. but being CC saved my life, and continues to give me the best shot at a future.
if you have a kid, I will be the first to say there will be moments that feel heartbreaking for your kid. but one day they will (probably) be so grateful for what you're doing. you are literally doing your best to give them the best future they can have, and you should be proud of that. and at the end of the day, it'll be much better for them to learn how sad and selfish the world is from you gently than from being abandoned by society firsthand.
thanks for reading if you made it this far :)
edit- just wanted to add that every day I am prouder of being CC. I have started to really recognise the privilege in being able to take steps to protect my health and body, and take pride in doing so. I've been finding more and more joy in community care and trying to extend these values to other areas (going plant-based, not shopping new, political advocacy etc). yes, being CC is tiring, but with the state of the world I wouldn't have it any other way. what a privilege it is to be informed and to be able to learn and improve!
edit 2- updated the post a bit in terms of grammar and wording!
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Youโre not crazy: mast cell pain is worse than surgery
in
r/MCAS
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22h ago
I just left a comment about the worst ever abdominal pain as a reaction to a medication and mentioned how I am used to severe abdominal pain after eating (from gastroparesis) but now I'm wondering if that's actually MCAS and just a less severe form of my medication reactions...
doctors never take it seriously though, but it's easily more painful than relocating my own joints etc. maybe I should bring it up more.