Moving with Chronic Illness
Written by Natasha Lipman
One of the most vivid memories of my childhood is the whole school cross-country race that I was forced to take part in when I was 10. I mean, everyone was forced to take part, it was a whole school cross-country race. I was a chubby child, with short, frizzy hair, often found subtly limping, while sporting an unseemly thick white cotton knee support underneath my thick wooly tights.
I remember the first few steps, and within a few minutes, my breath was haggard, my cheeks were burning, I had a stitch in my side, and my knees...my knees hurt SO much. But I had a full race to run, and in spite of being one of the oldest there, I quickly fell to the back of the mass of bodies running for the finish line. I wasn’t allowed to stop, none of us were. We had to run, or walk, but we had to finish. Because the lesson, finish no matter what, is more important than anything.
I was the last child in the entire school to cross the finish line. My PE teacher ran back to join me. Everyone had to wait until I was finished. The chubby, lazy girl who hated exercise finished last. What a surprise.
That experience marked the beginning of years of disbelief at the level of pain I was experiencing. It didn’t seem to matter that I spent my entire childhood in and out of physio. I was told I was double jointed and had wobbly knee caps. The first dislocation didn’t come until I was 11, and I was forced to walk on it at school. I wasn’t allowed to go home. I took letters from my mum to get me out of PE, and they called her to check I hadn’t forged them. I was called a drug-seeker as a pre-teen because I said paracetamol didn’t help me.
I was forced to play lacrosse in a short skirt and bare legs in the freezing cold. Made to run the 1500, throw a javelin, and play netball. The only exercise I liked (which was slightly marred by my hatred of my body) was swimming. It was the only thing that didn’t hurt me (until I buggered up my shoulders in my 20s and haven’t been able to since).
Getting a diagnosis of Ehlers-Danlos Syndrome at 21 was life-changing for me. I cried when I was told, not because I was sad. But because I finally had validation. My mind went straight to all the teachers and school nurses who made me feel like shit for ‘being lazy’, even as my friends pushed me around school on a computer chair because they knew my knees hurt too much to walk.
As I got older, pushing through was the name of the game. Even once I had a diagnosis, my ‘expert’ physiotherapists told me that I was ‘too stubborn to end up in a wheelchair’ and that if I just worked hard enough, I would eventually be physically fine. For the first time in my life.
What they didn’t do, however, was listen to me. I spent a number of years ‘doing exercises’ that the physios told me to do, even ones that I told them would result in an injury. Which, invariably...resulted in injuries. I’d crash time and time again, and as I got older, my pain worsened.
After a while, I gave up on physiotherapy, as I wasn’t seeing improvements. I’d given up on my body, physically, and was focussed on trying to lose weight, sick of always feeling like the fat friend.
I tried personal trainers at my local gym who caused me more harm than good. I joined the world of Instagram, I scrolled through pictures of thousands of women trying pilates, barre and yoga, and tried to keep up with ‘normal people exercise’. They, invariably, failed. I remember a pulled calf muscle from a couple of minutes of HIIT, and a subluxed rib from moving a bolster during restorative yoga (lol) as particular highlights.
My health was declining, with new illnesses popping up, and as I became unable to function, I tried even harder to exercise. A trip around the world of wellness and back (and that’s a story for another time), bolstered by a handful of sessions with an expert physio who actually knew her stuff and taught me so much about the peculiar mechanisms of my body, helped put things in perspective. I realised I needed to find a way that would help me move, safely, that was made for my body.
Sadly, both on the NHS, and privately (if you’re lucky to have insurance) long-term care is not available. There’s an expectation that you can learn everything you need to in 10 sessions, and take those lessons to help rehab from an injury. When you have a body like mine, injury is its constant state, but that state is constantly changing. What kind of movement my body needs in the morning can be incredibly different in the afternoon, so I need consistent, weekly, supervised exercise to help me strengthen in a safe and effective way.
It took me until two years ago, nearly two decades into chronic illness, and nearly a decade into a diagnosis to start to change my relationship with exercise. I look at it as ‘performance training’ - how can I work with my body to get it to move in a way that overall improves both my physical capacity, but also my ability to function overall.
I spent years pushing through agonising pain, believing that doing anything else was giving up. But I recently realised that forcing pain isn’t going to help me - if anything it was harming me. So I’m now a proud wheelchair user, but it has also meant that I do move significantly less than I did.
I work once a week with a trainer who is super attuned to my quirky body. When we first started, I could barely ‘sit to stand’ three times while supported. Now, I’m an expert! That, to most people, may not seem like exercise at all. When my friends brag about their run, I brag about standing up. But that shift in perspective has been so important for so many reasons, including my own safety.
When your body ‘breaks’ every day in different ways, it can be so hard to see your own progress. Having someone else remind me of how far I’ve come in the last year is invaluable. I may be walking less, but I’m getting stronger in the right way for me.
I’m never going to run a cross-country. Hell, I may never be able to walk to the shops without crying in pain. But I am nailing standing up safely from a chair unsupported. When I need help, that’s ok too. And that’s a bloody amazing achievement.