My story

This blog was one of the first things I wrote when well enough to write again about having long covid. 

A career advisor asked me: ‘What has your long covid taught you in terms of things you can put on your CV? Would you say you’re better at time management now?’ 

In the appointment I wasn’t able to articulate to myself quite why the question was so unhelpful, so I just stared blankly at him for a moment and then changed the subject. On reflection though, it is infuriating. You wouldn’t ask someone who’d just lost a leg, ‘Oh, is your hopping much improved now?’ A year and a half of having long covid and I still need 10 or 11 hours of sleep a day, and have to do tasks in a much slower manner. I’m not sure time management skills are what I need to cope with that. 

I wished I had said: sometimes something bad happens and that's just it – it’s bad. There isn’t anything to learn from it. Let’s just acknowledge that it sucks and figure out what job I can do now. 

‘Where there is sorrow there is holy ground’ Oscar Wilde wrote while imprisoned. I'm a sucker for Oscar Wilde and I love De Profundis, the long and bitter and beautiful letter he wrote while in jail, because it so exactly captures how at your lowest moment you most want to change, you most want to be ready to be taught something by the sorrow being forced on you! But it doesn’t work, does it Oscar. He went back to Bosie and absinthe and boys. 

Hera Linsday Bird I think has it closer in her poem, Pyramid Scheme when she says: ‘i never learned anything good from being unhappy/ i never learned anything good from being happy either.’ When I was first coming to terms with having long covid I so desperately wanted things back the way they were. I wanted to learn nothing from it. 

I liked my life before! I was happy, and I had worked hard to be! I did not want to have to become someone who enjoyed the slowest, most gentle yoga instead of chaotic late night running and pole dancing, someone who enjoyed rest rather than overcommitting to everything and enjoying it. I felt this even more deeply when I started to meet other people with long covid and recognised that many of them had been as overactive as me. I rejected the idea that my personality was hardwired to this catastrophe, that there had always been something dysregulated about me. 

But, whether I was mostly asleep or not, time kept passing. There is no going back, of course, to who I was before long covid, any more than any of us can go back to any moment in the past. 

So I suppose the irritating question has more to it than I’d like to admit. What have I learned?

It certainly wasn’t what I might have expected. While studying my Physics degree, I did an extracurricular research science communication project (see: overcommitting to things) where I looked at how medical research was communicated in the press (in summary: very badly). Although the research truly was communicated in a terrible way, with misleading headlines and misrepresented studies, I also saw how many of the comments by the public under the articles were from people with, or family or friends of people with, the medical conditions described. The comments were well-informed and articulate and thoughtful and showed a much deeper understanding of the science than the people writing the articles were expecting. Lived experience can be a powerful educator. 

It hasn’t worked like that for me. I have book after book on long covid, but most of them remain unread. The ones I have struggled torturously through I mostly hated and have hardly been able to retain any information from. I thought this was a sign of me not accepting my disability, but even now when I feel like I have come so far on acceptance, there is something in me that can’t hear the research on this.

What I’ve learned has been more practical. I have learned how to find a good psychotherapist, and how to go to the sessions every week, and how to end the relationship when I was ready. I have learned how to accept that I need help, and sit through group sessions in a hospital and (eventually) not hate them. I have learned how to believe myself in how I am feeling, mostly. I have learned when to let go of the need to convince people of how I am feeling when they can’t or won’t believe you. I have learned how bafflingly accepting and patient my partner is able to be. 

I have learned that there is no way to positively think or prepare or work your way out of a reality. I have learned that I thought it was possible to control and plan life and your body to a much greater extent than either can be controlled. I have learned how to let go of a job, writing a daily journal, friends, running, pole dancing, weight lifting, being able to cook for my sister after school, and many hours in the day. I have learned that I can survive this level of change and still construct a life where I am happy. 

And let’s be clear, all these things basically s u c k. I would far rather have put off most of this learning for another time. I would give a lot to have been able to give my partner an easy joyful year and a half, with me able to take equal care of her in the carefree, spontaneous way I could have before. But here we are – I have now learned these things, and so I am –  begrudgingly – proud of that. 

I am also proud of the things I’ve learned despite long covid. How to identify wild mushrooms! How to repaint kitchen cabinets! How to make my partner innovative breakfast sandwiches in bed! How to sew sequins on a wedding dress! What delights my nieces and friend’s babies are! A year’s worth of public policy masters! Ein bisschen Deutsch! 

Long covid is the worst. Learning to live with it is the hardest thing I have ever done, and ever hope to do, though I expect that’s a vain hope. And also, the last year and half has been a bop. Goodbye and thank you to everything I was before. And hello, and welcome, to everything I am now.