Falling Short?
Reflections on stopping.
Context.
This was written across September 2025, and a little bit before– in chunks on my phone, on my laptop and partly in my journal. I had to work through a (somewhat ironic) significant writer’s block with this, which was a challenge but thematically on point. Thanks again to my dad for his editing/proof reading.
Content.
This piece contains reference to Long Covid symptoms, symptom management and descriptions of mental health difficulties that arise with the realities of being chronically ill. It explores ableist patterns of what we are able to do/not do defining our worth and reframing these. There is a picture at the end of me and my cat Persephone.
We’ve been having a lot of rain. An entire season has passed since I published my last piece. Time it seems has skimmed over summer and landed us in the early days of fall. I like autumn, with core memories of scrunching leaves on the way to school and crisp sunny days. It has become one of my favourite times of year.
I experience seasons very differently of course, but I’ve bought two knitted sweater vests on vinted, dug out my longer pyjamas and started using the little kettle in my room for hot herbal tea in the afternoon.
I’ve also, after over three months, finally started writing again.
🍂
I’m not someone who is used to sacrificing writing. In some way or other for most of my life I have managed to make it work. Since June 2022 I haven’t been able to write (mostly at all, certainly not as before) and it has been one of the most significant losses of my illness.
Attempting a new writing practice for substack this year was incredibly difficult for me, but also rewarding in readers, subscribers and a deep strong reconnection to myself as a writer. Sure, it was different but it was something. It felt like glacial movement – but it was movement of a sort. It also was writing I don’t think I could have/would have written before I was unwell. So, it was also new. And new is good.
Then, because of a new external commitment, corresponding increasing symptoms, and various compounding factors I had to stop. And this new, intensely personal and really important thing that matters so much to me also stopped.
I did try for a bit. I tried writing about brain fog. I tried writing about my three-year anniversary of becoming unwell. I tried writing about summer. I tried writing a song. Nothing stuck. Everything slipped. In the end I didn’t even mean to stop. I couldn’t do it so I didn’t. Which seems an apt description of my past now 3 and-a-bit years. I truly think I have been in a boom/bust cycle of doom since the beginning of June. Even thinking about writing became impossible.
The external commitment was a pilot peer-support program run through the North London Post Covid Service. I had been involved with the steering group in 2024 and completed training in peer group facilitation and was part of the pilot team of volunteer facilitators.
At almost every step of my involvement in this program I was terrified. Terrified of how it would effect symptoms, worried I would be awful at the role and frankly starkly faced with how differently I function now. This anxiety was somewhat matched by reassurance from the organisers and my friends/family. I received quite a lot of support – which was lovely, but also felt like pressure. Pressure to start something. Pressure to contribute to society. Pressure to help people. Pressure to be useful. Well meaning as it was, I felt like I had to participate, even though I didn’t know if I could.
Turns out while I can, I’m not so sure I should.
🍂
Existing as a chronically ill person means making so many compromises and choices about what you are able to do. If I have this video call it will mean I can’t make lunch. If I shower today that means I won’t be able to do dishes. If I tidy my space I will mentally have better capacity to think but I will have to lie down instead. My days are literally structured around my ability to use the stairs. This constant negotiation and pacing for daily survival is exhausting.
It also takes so much more to then be able to do anything. I had a huge crash/symptom flare up after the peer-support first session and never recovered. I just became increasingly unwell. Interestingly the week-to-week reaction did improve but cumulatively it became far too much. My symptom severity increased – for example I went from experiencing joint pain during acute flare ups to it being constant and not having a pain free day for months.
This isn’t an essay about the program or the benefits/pitfalls of peer-support. I don’t think I can say either way if I regret sticking it out or not. There are many reasons why we continue with things that hurt us. I think I probably reasoned it would be fair to see out the first block of sessions. Regardless, every single part of my life became shaped around being able to deliver on my voluntary commitment to this program. My entire summer became about prioritising showing up for my co-facilitators (and the participants of course) and everything else stopped.
Of course, it wasn’t sustainable and unsurprisingly trying to hold some semblance of myself together to do this, shredded my mental health.
In the end stopping was inevitable.
The pressure became unbearable. I had three panic attacks in two days - the second one was the last straw, the third came with finally admitting to myself I can’t continue. In some ways – again – there isn’t even a choice. It just became impossible for me to contort any part of myself or being or body or brain into continuing.
I gave myself the weekend to process it before resigning.
I have written a lot about choice and how being this unwell is disempowering. How there so often doesn’t feel like a choice to do/not be able to do something, but that doesn’t stop the guilt, shame and blame that comes with stopping. This time I think I both learned and felt something new.
I explained to a friend that weekend how guilty and ashamed I am feeling about having to stop. That it feels like a failure. She makes clear eye contact with me and tells me that if all I have done on this project leads to choosing myself then that is the win. It was transformative! It had never even occurred to me, to be proud of stopping - that this could be an empowering situation and ironically give me control over the spiralling narrative that I had no control over my circumstances.
I’ve included here a small extract of my resignation email. Because it was so important for me to include reference to what my friend had said to me, and articulate how I was able then to reframe this.
I’m so tired. I cannot continue to prioritise an external commitment over my own recovery.
I was very hesitant to take on this workload and it has been a huge learning curve. Not all of it has been bad and I am really proud of the work my team has managed. Under considerable stress (particularly on the tech side).
And if what I have learned is that clinging on and crawling through a flare up, cancelling everything else in order to plan and co-run these sessions is not what I am prepared to do. Then that’s something I am also proud of.
I read back the email the day after I sent it and realised, I didn’t apologise for stopping, and I’m quite proud of that too.
🍂|
However, the positive mix of relief, pride and gratitude soon give way to a more familiar pattern of thinking. Failure and fault haunt me. They have been intrinsic drivers in my determination and pace of life pre- pandemic. Even still, deep patterns rivet through how and why I think. It is impossible to ignore and even if I know it is not true, it feels so true it hurts, almost more than if I didn’t know.
I wasn’t well enough to do this. I wasn’t able to work hard enough, recover enough, be well enough, be enough. I wasn’t enough. I wasn’t enough. I’m not enough. The spirals continue round and round and it brings me back to an old question, dredged up from before.
Who are you if you are not doing?
In resigning as a co-facilitator I realised I don’t think I have ever actually done this before. Stopped doing something in this way. Especially when I really believe in a project. I have stuck out difficult projects, worked with difficult people and compromised myself over and over again (especially mental health-wise) to earn a pay check and get the job done. Prioritising the art does get the art made, but it often comes at cost to the artist.
This ‘soldier on’ mentality is a big part of how I was raised. It is part of a work ethic that has seen me make some great art, persist through and ultimately survive some really difficult periods. In many ways it has served me well. But this almost instinctual instinct to continue on and on and on, also led to significant periods of burnout. The cycle became a pattern so ingrained it felt a part of who I was.
Then in March 2020 the world stopped.
Equally, as everything felt like it was moving again, in June 2022, I stopped.
And three-and-a-bit-years later here I still am.
🍂
I wrote earlier this year about when you are unwell how it can be easier to not want things. To just remove the want so you don’t try and fail. Starting again after stopping isn’t easy. It has taken weeks to come to terms with both what has happened and even be able to consider writing. After all, why choose to go through that hurt? It so often for me has felt easier and safer to remain stuck because it feels like it hurts less. You can rationalise all you want but the reality of your situation wins out.
This substack was the first thing approximating any sort of return to something from my life before and not being able to manage it hasn’t been easy. This “failure” also feels like it applies to having to leave the peer-support program. It has has been too much, too soon to think about, let alone write. It was definitely the right decision even if I have complicated feelings about it. I also naively thought stopping it would kickstart other things. Spoiler! It didn’t.
I eventually talk through this avoidance with S. It helps. Understanding always helps. I journal about it. Have a Big Cry. And, here I am writing.
This experience I had over the summer was mixed to say the least. I think it’s fair to say it both contributed to and absolutely destroyed my recovery.
I think all recovery is a practice and a process – it’s something ongoing for a lot of us. I have to be realistic and compassionate with where I am at; where I can meet myself. I haven’t felt connected to that concept for months. There has been a distance in where I am at and where I want to be. It is between that, that I have fallen into these past few months. There isn’t a right way to do this.
I might be unable to do something, might have to stop and that’s ok. It might not feel ok. But it’s alright. The same with beginning again.
Stop. Start. Stop. Start.
Outside my window the leaves are dancing in the wind.
It almost feels like I’m moving again.
Thanks for meeting me where I am at. (Under the duvet, again)
Tilly x
Congratulations on stopping 🎉 If you needed reminding: you didn't need to write this for us to know you are and are doing more than enough. But thank you for your steady attention - to yourself, to your words, and to the leaves 🍂.
Beautifully written!