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The Long Covid Collective

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Hi! My name is Shannon I'm 26 and live in West Yorkshire - originally from the north east of Scotland.


As a background; I'm a qualified social worker and worked throughout the "lockdowns" etc.


In total I have had COVID 7 times 😭!!!!!


My first was right at the start of the pandemic, and I couldn't even tell you the exact dates of the others - but I know my last infection was September last year which is definitely the infection that pushed me over the edge.


I've always had a rubbish immune system (I also had swine flu as a kid, and "post viral syndrome" after this - developed asthma, some fatigue (went from an avid cross country runner and horse rider to pretty sedentary)).


Following my COVID infections, I was initially diagnosed with POTs in march 2022... Long COVID... Now 2 weeks ago ME/CFS ( I also have endometriosis).


So my health is proper in the gutter at the moment. I have a lot of guilt and anger towards myself that I'm working through, as I kept pushing and pushing and pushing myself - having to sign off sick for a month, then repeating.


I'm currently signed off of work due to a big big crash - bed bound at the moment. And if I'm honest I'm not sure if I'm going to be able to return to the career I worked so hard for and love. I have thought about the possibility of part time when I am better... But part of me knows that even that will be too much, due to the emotional, mental and social aspects of the job, along with the physical side. I just feel so rotten just now. Myself and my partner were relying on my wage as he went back into education to help us with our future... Now it's all just up in the air. We have signed on to UC, I've applied for PIP and ESA... But I just feel so lost.


It's almost like I'm needing to grieve and give myself permission to accept that I'm really chronically unwell... I dunno. It's hard to put into words - but I'm grateful to have hopefully found a community that feel similarly to me - this has all felt so very lonely.


So thank you Jemma for making this space.

Jemma Bella
S
Jemma Bella
Jemma Bella
Jul 29, 2023

Hello Shannon,

Sorry for the delay in reply- but I know that the long covid community understands this more than anyone else!

Thank you so so much for sharing your story, you have written it so well!

I am just so sorry I am writing to you under these awful circumstances. I am so sorry you have been struggling with long covid and then with the endometriosis, POTS and now CFS! It must be a really tough time for you. I really hope you have been getting all the support from doctors with these conditions?


I can definitely relate when you say about ‘pushing yourself’, I have been there and done that! I think it’s our most dominant instinct that’s been fed to us by society (you are only worthy if you are doing something and achieving something). Crazy that we all feel the same! But also the fact that you love your job can also be extremely tough to navigate because it comes with all the guilt and grief too.


That is so cool you are a social worker! It’s something I looked into when I was thinking about what I wanted to do after university. I think that job just shows the dedicated and hardworking person you are and I can imagine there has been a lot of guilt and stress built up with it and being unwell. I experienced it with teaching. Your commitment and love for your job shows what a wonderful person you are and that’s something you should be really proud of. Long covid can’t take that away from you (although sometimes it may feel like it can).


I really hope that you are accepted onto UC soon and can start getting the support you need so that big pressure can be relieved. I know you already know this but it’s obvious you have gone through boom and bust cycles with being at work and then having to take a month off. I went through that too. I am just so sorry. The most important thing is you. Don’t ever believe otherwise! Your job, your hobbies, everything else in your life comes second to you. That took me a long time to realise but once I did it really helped with the guilt/grief about work. My work didn’t define me, I define me and same for you!


Please know though Shannon that you aren’t alone with this! You are never alone and I understand what you are going through and all the emotional stuff too (which to be honest can be worse than the physical!). I really hope you can start to really recover soon and can get all the support and help that you possibly can. I know it can seem really dark right now but please know it will get better.

Make sure to look after yourself and cut yourself some slack, and also don’t push yourself back to work if you’re not ready! Because as you’ve worked out, it will happen again! Work can wait, you and your recovery can’t.

Please keep in touch! Sending so much love, Jemma ❤️

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