The pain barrier

By: Elise Shakaila

It’s something that people take for granted each and every day, but I can’t remember the last time I felt comfortable. Whether I’m sitting in a chair, lying in my bed, standing or walking, comfort is a very elusive feeling, an unattainable goal that seems frivolous but is one of my greatest desires. In a nutshell, that’s my experience of living with Ehlers-Danlos syndrome. On the spectrum of the condition I’m aware of how lucky I am to be on the lower scale, to be able to walk unassisted and to suffer very infrequently with subluxations, sprains and breakages but the pain I experience on a daily basis is often unbearable.

Whilst I was diagnosed early on at 12 years old, the road to that diagnosis was a long one. At one point I was told I might have lupus and quickly after that, I was referred to counselling in fear that I was being exposed to Munchausen’s syndrome by proxy. Although I was young and not completely cognisant of the seriousness of the situation I remember vividly that feeling of uncertainty and worry. Getting that diagnosis was such a relief but the intensive course of physiotherapy I was immediately placed on after was even better. I became stronger, more involved in sports and dancing – it got to the point where I was so active and healthy that the pain was an afterthought. We thought I had grown out of it and we were told that this is something that happens often. “Great, I’m done with all of that” I thought, until that is, I went to university. Trainers got replaced for high-heels, my oyster card with four new wheels and dancing with textbooks. It’s common knowledge that when you get older you become more sedentary but for someone with EDS a sedentary lifestyle is a hard one.

Since the pain crept back into my life I’ve had an operation to help with the curvature in my spine, I’ve met with pain specialists, sleep specialists and several physiotherapists who all say the same thing ‘you have to move’ with an emphasis on ‘have to’. That’s all well and good and being competitive at heart I’m always in a position where I strive to outdo myself. I want to be better than I was yesterday but the higher you climb the further you have to fall.

Starting back in the gym is so very hard. People talk about being sore from the gym but when you’re still in utter agony three to five days after your initial visit it’s not so easy to jump back on to the elliptical. When you’re not one of those people who has a general aversion to the gym it’s even harder because you do actually want to be there and living with EDS, you know that you have to be there, but the initial cost-benefit scales are heavily tipped in the former. It’s a vicious cycle. You finally pluck up the courage to get back in the gym, you do your set mindful of not over-exerting yourself and you feel great. Then, you get pain, bad pain and it drags on and on and you put off that return visit a bit longer than you should. The cycle continues like this making it near impossible to break through that initial pain barrier.

When people with EDS talk about pain it’s not just the physical experience. It affects our sleep, it affects our mental well-being and of course it affects our day-to-day activities. Being active and doing your exercises no matter how little is paramount to a healthy and liveable lifestyle but tell me this, when the thing that is supposed to heal you is the same thing that harms you, what do you do then? I haven’t quite figured this out yet but I’m happy to say that I’m taking baby steps each day. Breaking through that pain barrier takes an inner-strength that people with EDS should be proud to possess and I’m happy to be part of a community of people who live their life consistently taking lemons and making lemonade.