My name is Abbie, I’m 22, I have been swimming since I was 3, and I have an invisible disability called Thoracic Outlet Syndrome (T.O.S). I started competing when I was 8 and have loved swimming ever since. I managed to compete up to regional level when I was a teenager, and more presently, national level at BUCS.
When I was a kid, I wanted to do anything and everything, I don’t even know how my parents coped with the amount of after-school activities and clubs that my brother and I used to partake in. I did gymnastics, obviously swimming, karate, brownies, tennis, football, cricket, athletics, rounders, basketball; anything sporty, you could count me in.
Finally, I started to concentrate on my two favourite sports; swimming and hockey. At one point I was training 5-7 times a week for swimming and playing hockey 3-5 times a week.
I remember my first symptom of Thoracic Outlet Syndrome so vividly – I was 12 years old and racing 200m freestyle at my club’s championships, attempting to get a good enough time to send me to regionals that year. On the sixth length (it was a 25m pool) I lost feeling in both my hands. The only way I could describe it at the time was like my hands were covered in dough or like there was a force field around both my hands stopping me from feeling anything. I couldn’t feel the water with my fingertips, I couldn’t feel the drag as I completed another stroke. I inevitably panicked – or rather had a full on meltdown – and had to get picked up out of the pool.
It took a long time to diagnose me with Thoracic Outlet Syndrome and to be honest I don’t really remember it… I was so naive to what was going on with my body, all I wanted to do was get to regionals and swim to the best of my ability.
The road to diagnosis included serious talks about a possible brain tumour, more X-rays and MRI’s than I can remember and multiple ECG’s whilst doing sport and nerve conduction tests. I was finally sent to see my current consultant, an amazing doctor who diagnosed me with this shoulder disability.
I still don’t fully understand T.O.S, but here’s a brief NHS definition of it: compression of the nerves, arteries and veins in the lower neck/armpit. Basically my muscles squeeze my nerves/arteries/veins that go over my first rib, to cause pain, swelling, discolouration, numbness and did I mention pain?
As a 14 year old then, being told about this disability, I thought my life was over. I specifically remember the conversation of “you should not be swimming anymore”. What do you mean I can’t swim anymore? Surely it’s not that bad? It is fair to say I did not listen – I kept swimming. I went to physiotherapy to correct my posture and ease the tension in my thoracic spine, but of course, it got worse – so bad that I couldn’t even carry my school bag without being in chronic pain.
So, in 2012, when I was 15, I had decided to have surgery to remove my first rib on my left-hand side to relieve the compression… and that was it, that was the end of my swimming career. The operation didn’t solve my T.O.S although it definitely helped and it is no where near as bad as when I was first diagnosed. Swimming seemed to be the main cause of my pain, plus with GCSE’s and A-levels coming up, I couldn’t afford to go into hospital again.
I carried on playing hockey, and managed to play for the Birmingham Lynx Regional Squad in my last few years of playing after my surgery. Turns out a winter sport in British weather isn’t the best for Thoracic Outlet Syndrome either. So after a season playing for the university 3rd team and multiple trips to the hospital, I again had to have that conversation of “you shouldn’t be playing hockey anymore”. I was 19, feeling 90. How had I managed to reach this state of not even being able to pick up a hockey stick?!
My mental health rapidly deteriorated from there – I was living far away from home and didn’t feel strong enough, mentally or physically to even attempt a new sport or hobby. I felt lost, stressed and alone, like Thoracic Outlet Syndrome had destroyed my life.
My second year of University changed everything for me, I had the best support around me and I made the huge decision to get back into swimming. This is the best decision I have ever made – I got to understand my body and T.O.S and how far I can push myself. My mental health grew from strength to strength and I met some of my best friends at this amazing university club.
There have been a lot of ups and downs since then, but I’ve now graduated from University and am in a graduate scheme where I work Monday-Friday 9-5 (with the occasional night shift added in for good measure). I’ve also started a masters swimming club, and aim to go to the British Masters Nationals in October. I understand my body now (or so I think), I do yoga three times a week to prevent injury, I swim once/twice a week and go to the gym as much as I can to improve my posture and back strength. But I’m still waiting for that next conversation of “you shouldn’t be doing ‘x’ anymore”.