The 25th July marked exactly one year since I first got covid – which I think also makes it the point where I officially became disabled. I have a lot of mixed feelings about this milestone, so I thought I’d write about them. (It feels sort of fitting that it’s taken me a month to find the energy to spare to do so.)
On the one hand, of course I never wished or hoped to be here. Of course it’s almightily frustrating to feel you don’t have enough energy for all the things you want or need to do. Of course I could wish I was able to give my husband more support with childcare and housework, or to take my son out on exciting day trips. Of course I could wish I was able to put in more hours at my new job, or to concentrate for the long stints required to finally finish my book.
But I learned very early on in my long covid journey that I did not have energy to waste on railing against my situation. One of the paradoxes of long covid has been that, when I’m able to accept my limits and work within them, my limits naturally expand – sometimes quite quickly. But when I’m constantly pushing against my limits in the belief that I should be able to do more, I either get better very slowly or actively get worse. So I’m learning to accept reality, to take each day as it comes and to find the gifts in it – which, to my surprise, have been many.
I’m also coming to realise that being the person we want to be is about the qualities we cultivate, not the quantity of stuff we can get done. I think I have learned more and grown more in a year of being disabled than I did in 35 years of being able-bodied. I think I’m becoming a better partner, a better mum, a better colleague and a better writer with long covid than I ever was without it. I know I am a happier one.
So, for the time being, I’ve come to accept that I am disabled – and, as it turns out, I am okay with that. In fact, I’m proud to call myself disabled, because being disabled has changed my life.
Chronic fatigue is like those disclosing tablets they give you at the dentist that show up where you haven’t brushed your teeth properly. It ruthlessly exposes the things that are draining your batteries, in a way you never could have noticed when you had enough energy to get through the day. And, in the same way that people living in poverty know more than anyone else about getting the most out of their money, people living with chronic fatigue know more than anyone else about getting the most out of their energy.
They say constraint fosters creativity, and long covid has forced me to find new ways of moving through the world with more ease and less struggle. As someone who has spent most of my life pushing through exhaustion in the mistaken belief that this was what the world needed from me – which, let’s face it, is probably part of why I got sick in the first place – this has been a revelation.
I’m learning to listen to my body and work with rather than against it. I’m learning how to “plan, pace and prioritise” my activity and how to take proper rest. I’m learning to avoid multi-tasking and disengage almost entirely from rolling news and social media doom scrolling. I’m learning to keep screen time to a minimum and to get out in nature as often as I can. The more I learn about the way our brains work, the more convinced I become that we could all benefit from doing these things a bit more. I started doing them out of necessity, but I think I will continue doing them out of choice.
I’ve also been forced to learn how it feels not to be constantly stressed, overwhelmed and overworked. I simply don’t have the capacity to do that to myself any more. And – quelle surprise – it turns out I actually function better when I’m not stressed and overwhelmed. I think more clearly and more creatively. I’m calmer and more present with my son. I find it easier to listen and be open to other people. If and when this illness does leave me, I think it will leave me more efficient, more effective and more able to stay well than I have ever been in my life.
But I think the most profound gift long covid has given me is the way it has changed my relationship with myself. After a lifetime of being my own worst enemy and my own harshest critic, I am finally becoming my own best friend. After a lifetime of beating myself up for my mistakes, I am finally internalising the truism that mistakes are part of how we learn. After a lifetime of measuring my worth by my productivity, I now know who I am when I cannot work. After a lifetime of being defined by my intellect, I now know who I am when I cannot think. I have learned to love that person.
This doesn’t mean I now feel less motivated to work – quite the opposite. I feel more passionate about what I do and clearer about why I want to do it than ever. I’ve loved getting back to work, and am really looking forward to being able to do more. I just no longer feel that my value as a person is contingent on doing more. The poet Mark Nepo speaks of the difference between being “driven” to do things and being “drawn” to do them. I think this sums up what has begun to shift for me since getting long covid.
So no, if I could wave a magic wand and make it so I had never become disabled, I would not do it. I don’t want to go back to the way I used to live. Long covid has shown me that there’s a better way.
Of course, I don’t mean to imply that being disabled is easy. On the contrary, it is extremely fucking difficult. If long covid has given me a renewed appreciation for the wisdom, skills and perspectives that disabled people bring to the world, it has also given me a deeper empathy for how hard it is to be disabled in this country. The past year has been gruelling in many ways, and life still frequently feels like a struggle. In the absence of a functional social safety net, my heroic husband and our endlessly supportive parents have also had to absorb a hell of a lot of pressure – financial, practical and emotional – to make this recovery journey possible.
I never applied for benefits, even though I was almost certainly entitled to them, because I knew the stress of engaging with the DWP’s adversarial processes would in all likelihood make me sicker. I’ve recently joined a long covid peer support group, and their stories of hostile interviews and stressful appeals processes have sadly confirmed that my instincts were probably right in this respect. I was lucky enough to be able to survive without having to navigate this broken system. I’m acutely aware that not everyone can afford the breathing space to find the gifts in the struggle. All I’m saying is that the gifts are there.
In January, a friend sent me a poem by John O’Donohue called “A Blessing for a Friend on the Arrival of Illness.” The poem wishes the friend the courage to “embrace this illness as a teacher”, the wisdom
“to listen to your illness,
ask it why it came,
why it chose your friendship,
where it wants to take you,
what it wants you to know.”
I appreciated the sentiment – after all, this was very much how I had come to relate to my long covid – but I thought its relevance to my future was limited. I thought I was done learning the lessons long covid came to teach me, and – perhaps because of that – I thought I was nearly done with long covid. As it turned out, I was wrong on both counts.
After my symptoms dramatically lifted late last year (apparently this is called a “remission event”), my doctors expected my residual fatigue to resolve within “weeks or months”. Ironically, the belief that a full recovery was just around the corner led to me constantly overdoing things, which ultimately slowed me down. Just because I suddenly could push through fatigue again, that didn’t mean I should. I thought long covid had taught me patience, but I was still far too impatient to have it out of my life.
Clearly, this illness does still have things to teach me. And anyway, not everyone magically gets better as soon as they’ve learned their lessons, because life isn’t a fairytale. At the moment, I’m making good progress and am cautiously optimistic. But after a year of riding the long covid rollercoaster, I’ve learned not to take anything for granted. My relationship with this illness is not over yet.
It might seem strange to describe this relationship as a “friendship”. Like a lot of good friends, long covid is undoubtedly a royal pain in the arse. Like a lot of good friends, it has told me some unwelcome home truths. But, like all the best friends, it has told me the truths I needed to hear, and I think it has made me a better person.
So: happy anniversary, long covid. I can’t say with my hand on my heart that I hope we’ll see many more – but if we do, then that is okay. I’ve learned to love you, warts and all. And I’m still listening.