Learning to sit with uncertainty

Letting go of expectations and waiting to see what will emerge

It’s taken a year to write this. I’ve started and stopped along the way. It has lived in pieces on my phone, in fragments dashed out and forgotten. Our minds are powerful when it comes to protecting us from the places we are scared to go. 

I ended 2022 feeling exhausted. And also, frightened.

After three months of bone deep pain and barely any quality sleep, I had been referred to a rheumatologist and was now waiting to get the results back from my blood tests. Fortunately, I was referred to a consultant whose friend, a fellow doctor, had the same rare autoimmune condition that he suspected I had developed. A type of inflammatory arthritis that is so under-researched that no randomised clinical trials have been carried out to date, despite it first being reported in the 1940s.

More than a little magical - one of the first walks I was able to get out on last winter

It came out of nowhere. Or so it seemed. I woke one night with a throbbing knuckle, pain radiating down my swollen finger. A tiny puncture wound pricked a memory - bramble picking in the woods. The seasonal habit of a lifetime, now revealed by the power of the Daily Mail (ugh!) to be potentially devastating. The next day I dashed to the doctor quicker than you could say fungal infection where, due to the mysterious nature of the swelling, a dose of just-in-case antibiotics was swiftly administered.

A week or so later it happened again. But this time it was my other hand. And then it was my wrist. And then the other. And so it continued, for weeks. Hot, throbbing joints. Fingers red and splayed in a claw-like grasp, unable to move or bend.

Aside from the deep fatigue and jarring of nerves when I would accidentally brush my hand against even the softest of things, the most difficult part was the uncertainty. Some days I would wake with a body that worked. Others, I couldn’t grip the handle of a coffee mug or open the car door. As someone who is self-employed and has made a living from my hands - via photography and writing - for the past 20 years, it was pretty terrifying.

To add another curveball into the mix, my shoulders had simultaneously destabilised. Which felt like having two jellyfish as arms, dangling helplessly in the one position that didn’t hurt, stinging like hell when they moved a few millimetres in either direction. 

I couldn’t go for a walk, let alone get to the gym. I spent the small hours trying to find a comfortable position on the sofa while my family slept upstairs, falling down internet rabbit holes and applying my credit card to anything that might help ease the pain - ice packs, heat pads, a TENS machine, my kitchen cupboard overflows with them.

By day I studied coaching psychology. By night I read account after account of people managing their pain and mental health. Marvelled over the resilience of folks in their 20s who were living with rheumatoid arthritis. Tried not to look at the scary photos Google insisted on throwing up. Realising I’d taken my ability to move and jump and dance and climb, utterly for granted. Meanwhile, an entire community of people I’d been completely unaware of were reaching out to each other online. Sharing tips with newcomers to the world of chronic, and often intolerable, pain.

That, my friends, is how I rolled - more like slid - into 2023. Burnt out, yet still with a deadline to meet. Which is pretty much the story of my life. But this time around, I threw self-compassion at the situation. To give myself time to recover, I took a study break. And I’ve been reshaping my life and work as much as possible since to try to accommodate future flares. 

Star decoration by PaperStreetDolls - I love the way the light falls on it, so it stays up all year

I had started the year on a different waiting list. In March 2022, I travelled to a clinic in Stirling where I spent the morning with two wonderful, neurodiversity-affirming professionals, discussing my way of being in the world. It was the final piece in a diagnostic process that started with questionnaires and video calls. But years before, began with a curious, nature-loving, busy brained girl wanting to buy a Tshirt that said “The world is blue. I am orange”*.

As I travelled home on the train, I held my newly confirmed Autistic/ADHD identity close, fearful that after working so hard to unearth this truth, I might leave it behind on the 3.17 to Perth. I’d known I was neurodivergent for some time, but with a hefty spoonful of CPTSD in the mix, it was hard to discern exactly what flavour of differently wired I was dealing with. 

In the weeks that followed the assessment, I mostly carried on as before. Slowly integrating this new, yet old, knowledge into my self, while processing the previous 40 years through a new lens. Sweeping a torch into dark corners, dialling up the self-care as the shadows grew. I tentatively tried on the world ‘disabled’ for size, rolling it around and twisting it this way and that, seeking a more comfortable fit before rejecting it. Confronted, yet again, by my inner ableism. 

So it came as something of a shock to then find myself suddenly contemplating a future of physical disability just six months later. To be thinking about whether we would need to move to a house without stairs. And this time, there could be no subconscious hiding. You can’t mask a frozen body.

The plot twist is that today marks a year since the last flare. The symptoms stopped just as suddenly as they had begun. And, for now, we’ve agreed to press pause on the treatment plan to avoid potential side effects. While I pop Ibuprofen as soon as an ache begins, and still live in fear of waking with hands that are unable to write, or hold the ones I love, I also have weeks where I forget that this is even a possibility. Where once again I am able to take my good health for granted. 

I don’t believe in magical thinking. And yet, there’s a primal part of me that has been avoiding sharing this story for fear that doing so will cause the condition to reignite. I’ve been advised that it may return in 5-10 years. It could come back sooner or, if I get lucky, never. It’s easier to exist from a place of denial. But in writing this, I was forced to sit once again with the following:

“It is established that most patients with palindromic rheumatism evolve to chronic disease, of which rheumatoid arthritis (RA) is by far the most common.”¹

I’ve spent the last year learning to live with this uncertainty. Letting go of expectations and assumptions, and appreciating that a day when I wake with joints that work is a good day. I remind myself of this when the alarm goes off and it is dark and cold. When getting out of bed to go to the fridge-like CrossFit gym feels like an entirely unattractive option. On days like today.

There have been some incredible highs this year. Trying flying trapeze for the first time was one, even if I did split my palm open and bleed all over the bar (standard circus stuff, I was reliably informed). It was an exhilarating and empowering way to celebrate coming through what felt like a death of sorts. The death of hands that can be relied upon to work. The knowing that, no matter how well I try to look after it, my body may choose to attack itself.

Another highlight has been getting to add more and more plates to the bar, once I was finally allowed to lift weights again. As a side-note, if you are new to strength-training most days will be a personal best. So there’s that to look forward to. And I know you probably won’t believe me, but being able to do burpees now feels like a joy. A sweaty, heart-pounding joy, but still one all the same. 

The before the WOD photo - the after one has more purple face tones

I’ve also started letting go of things that I’ve been holding on to for too long. Old dreams that no longer feel like the right fit. Streamlining and simplifying my life, to make space for new things to come. The blog and magazine I created and spent 10 years working on is now in new hands. And I’ve pressed pause on leading a creative community that, while deeply aligned with my values, needs more energy to flourish than I can currently give.

What this next chapter will hold, I don’t yet know. Once again I’m ending the year in a place of uncertainty. But this time, I’m more comfortable with the not knowing. For now I’m resisting the oh-so-ADHD urge to press forwards with shiny new ideas and plans, and instead am gently trusting that things will unfold in time. 

For now, I’ve got plenty to keep me occupied. There’s the MSc to finish by May and I’ve treated myself to a poetry course led by Michael Pedersen for Moniack Mhor in January. After a lifetime of feeling like I couldn’t invest time or money in pursuing my love of creative writing, I’ve finally accepted that I simply can’t breathe without it. And if now is not the time then when?

I’ll keep leaning into the words in 2024. And I hope there will be more playing with paint and getting sticky with collage too.

And maybe, just maybe some of the other fractured pieces of writing left in the wake of these past few years, similarly abandoned due to their potency, will begin to emerge and alchemise* along the way. 

Where do you hope the words will take you in 2024? And is there anything you need to let go of, to make space for something new?

*1 I haven’t managed to track down this late 80s / early 90s Antoni & Alison T-shirt but I live in hope. It cost £25, which was way beyond my pocket money means.

*2 Shout-out to Isabella of

Animal Interiority

for bringing this wondrous word into my week via a prompt in our writing group

1. Sanmartí R., Frade-Sosa B., Morlà R., Castellanos-Moreira R., Cabrera-Villalba S., Ramirez J., Salvador G., Haro I., Cañete J.D. Palindromic Rheumatism: Just a Pre-rheumatoid Stage or Something Else? Front. Med. 2021;8:657983. doi: 10.3389/fmed.2021.657983. - DOI - PMC - PubMed

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