Being a teenager is one of the huge whirlwinds of life and is complicated enough without our (what I like to call) “added extra’s.” Unfortunately, being a teenager and developing problems linked to our hypermobility seems to come as a package deal for a few of us.
The first thing that I think is super important for everyone to remember; is that you’re a teenager first. You’re a hypermobile teenager second. You are still a child, still someone trying to figure out what you want in life and who you want to be. When your life suddenly turns on its head, you change, and the way you see yourself changes too. It’s so important that the people around help you see that your still you, just with a few new “added extras.” You have to learn to shift your expectations and accept what limitations you have, but to never give up.
Years 9 – 10 seem to be the peak time of diagnosis for hypermobility syndrome, this can be difficult as secondary schools can be difficult to navigate and pose their own unique challenges. You feel different and not so much yourself as before, some schools tend to struggle to cater for accessibility needs, which can create the feeling of being a burden and feeling as if you stick out even more. I had to take routes outside in my wheelchair as their were stairs stepping up along the ground level of my school, in the winter you can see why this was especially hard and subsequently it took twice as long, sometimes leaving me late for lessons and creating more problems with me adjusting to this new situation. It’s also difficult having an illness that is hard to diagnose and for others to understand. Many people assume that you’re exaggerating as “they’re hypermobile” and manage just fine; hey they’re even better at some sports because of it! Hypermobility syndrome is an entirely different beast and something that only affects some of us, leaving people to make unfair assumptions.
You cannot always push through your illness, no one is trying harder than you, but sometimes the best thing you can do is to stop trying. The dreaded “pacing” I know! Some people may tell you you’re not trying hard enough or are being soft, it’s the hardest thing to hear when in fact you are doing the exact opposite and can make your condition worse by pushing through. I still remember being in school for a short period of time and a teacher telling me I ought to be back in school full time by now. I’m not joking either.
You must remember that you aren’t a burden, you aren’t an inconvenience and you are no more important, but certainly no less important than anybody else. One of the most important things is learning to have balance, the right amount of exercise, work, rest and most importantly, happiness and fun. You deserve, like everyone else, to have fun with your friends and enjoy some down time for yourself. One thing that became an option for me at the beginning of year 9 was to drop certain subjects, it’s a tough decision and not one you want to have to make, but there comes a time where you need to be able to enjoy a life outside of school. One option is to try looking at subjects that involve more coursework than exams. For me it was difficult at the time, but now sitting in year 11 revising for my GCSE’s I’m so glad I made the choices I did, I’m now planning on going to college next year instead of Sixth Form (something I never planned either) to study a two year course in photography. Your life is going to turn out differently, you are forced to take a different path, my GCSE results won’t look the same as my peers but those marks will mean more to me because of how much harder I had to work to get them.
Until I started experiencing more severe symptoms over the last two years I’d never have thought about photography being “my thing” but it is! You will find that due to certain limitations you find new passions born out of the hardest of times. My first photos for my GCSE course were taken during a difficult hospital stay; it’s funny what you might find out about yourself! College will offer me so much more than what I have now; they cater brilliantly to needs “outside the norm” and hold very little, to no, restrictions on what I am able to participate in. I didn’t want to consider other options outside what I thought I would do but once I did I found it was much better than trying to reclaim what I had missed. You can’t get those years you missed back, you have to look forward and at all the things you would never have done if it weren’t for your struggles.
Although it’s hard when people ask, and you really aren’t sure what’s wrong with yourself, know that there does come a time when you find charities and organisations like the HMSA, and are able to make sense of your body and why it is the way it is. Which brings me onto my next point; being listened to.
As teenagers we are expected to act like adults and treated like children, which seems to only intensify when you have a misunderstood illness, are speaking to doctors, who sometimes need to do a better job of listening as well as explaining. YOU are in your body and YOU deserve to be listened to as you and only you really know the way you’re feeling.
This time in your life can be really tough, especially when dealing with hypermobility syndrome on top of the teenage struggles. You’re still you, you can still have a wonderful time in this chapter, just remember its not the end of the story.
HMSA Youth Reporter