The Long Covid Collective

Hello Selin!

First of all… I am so sorry for the delay in reply to this - I missed the notification and then haven’t been feeling great so hadn’t been on here! Sorry!!

Thank you so much for sharing your story. It sounds like you have had a really really tough time. It must have been awful to go through this and not be believed. I really can’t imagine how must have felt. 15 is so young to go through something like this and it must have been incredibly tough with the pressures of school and also with your mental health. You should be so so proud of yourself Selin for all that you’ve gone through. It really is not an easy journey and for you, it sounds like its be a big rollercoaster with lots of hurdles to overcome and lots of emotions. I am just so sorry you have had to go through this! I am also so sorry to hear you aren’t attending school at the moment. I really hope you are finding some opportunities to do things that you love, even if they are small things and for a short time.

I am pleased to hear now that you have been diagnosed with long covid, it must have been some relief to get an ‘answer’ - although it still doesn’t help with the symptoms! I too had ‘normal‘ blood work With every test they did and it infuriated me. How could everything appear so normal but I felt so unwell? I just did not get it! So you are definitely not alone there!

I am so sorry you are still struggling with it all and feel alone. I hope that soon you will be able to get back to school and see your friends. Please know that you are never alone, this community is always here! (I promise I will reply a lot quicker this time!). I really hope you are getting the support you need with it all. Thank you again for being so kind to share you experience with this, I just really hope you start feeling better soon and get some relief from it all!

Sending so much love Selin and always here if you need it! ❤️

Ps. You English is absolutely perfect! I wish I could speak in German how you speak in English! It is awesome!

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 ❤️