Hypermobility: The condition that takes away…

 In Adapting, Chronic Illness, Disability, Emotional Impacts, Grief, Identity, Independence, Mental Health, Pacing

Hypermobility is a stealer. It steals so much from those who live with it, making it feel like the label should more appropriately be “Hypermobility: The condition that takes away more than it gives”. But it is important to remember that it does give too, even if only in small ways.

Hypermobility: The condition that takes away | Hypermobility Connect

I’ve known this truth about hypermobility since I was 10, yet 24 years later, I’m still thrown by its stealth and determination to seemingly ruin my life; our lives. I know I’m not the only one who experiences this, I listen to people with hypermobility talk about this on a daily basis.

When I was 10, it severely impacted and eventually took away my ability to play team sport. The collateral damage of which was having difficulty maintaining friendships with the people who I used to play those sports with multiple times per week. Add to the mix the frequent comorbidity of anxiety, and it was challenging to make new friends, maintain current friendships and deal with what on earth was going on with my body (undiagnosed).

By the age of 12, it had taken away what was left of my childhood and thrust me headfirst into the world of doctors, medical procedures and surgeries. By 17 it was threatening to take away my ability to finish high school, but I fought that one, almost to the death.

It took away the concept of spontaneity. It took away a “typical” adolescence. It took away the opportunity for after-school & weekend jobs. It took away the ability to save money.

It’s taken away jobs. It almost took away my career. It’s taken away friends.

For me, it has taken away more things than I remember, but the most recent has been my ability to engage in some of the creative pursuits I had come to enjoy. I was late to the party on learning to draw which I did back in 2013. I fell in love with it and painting as a medium to express my creative side. However, despite all efforts to make ergonomic adjustments to my drawing surface, I’m no longer able to pursue this due to it triggering neck pain and chronic headaches. Similar stories rock the worlds of people with hypermobility conditions the world over.

Hypermobility has also taken away my ability to:

  • go to the gym
  • swim
  • drive long distances
  • sleep for as long as my brain needs
  • walk very far on some days
  • and so much more.

I’m a big believer in give & take. And perhaps the universe (insert deity) does too. Because for all the things that have been taken away from me, other things have been given to me.

If I had continued playing sports, I wouldn’t have focused on my academic side as much; I wouldn’t have pursued Girl Guides from “Brownies” through to achieving my Baden Powell Award at 16. I wouldn’t have learned to work towards a bigger goal by reaching small stepping stone goals.

If I hadn’t been thrust into the medical world at a young age, I wouldn’t be as comfortable as I am with doctors, both as a patient and a professional. I wouldn’t have passed anatomy so easily! I wouldn’t have become an occupational therapist.

If it hadn’t taken away the idea of spontaneity, I wouldn’t be such a rockstar planner with an eye for detail and the ability to smash a deadline out of the park (most of the time!)

If it hadn’t taken away my adolescence, I wouldn’t be able to empathise so deeply with young people with this condition and what it feels like to see your life disappear before your eyes.

If it hadn’t taken away the opportunity for after school/weekend jobs, I wouldn’t have had time for pacing, for physio exercises, for pursuing creative endeavours and learning new skills.

If it hadn’t taken away jobs, I would probably still be stuck teaching swimming lessons to 5-year-olds or working in a Paediatric Sensory OT Clinic (getting injured!).

If it hadn’t taken away friends, I wouldn’t have learned the value of true friends and how to trust and be loyal to the ones who do choose to stick by me.

If it hadn’t almost taken away my OT career, I wouldn’t have started Hypermobility Connect. I wouldn’t have started planning an awareness campaign for May 7th – 13th called The Hype About Hypermobility…. and I wouldn’t be returning to practice in May 2018 under a new business name Rheumi Occupational Therapy, working with adults with hypermobility conditions.

So that which has taken away has given much.

I challenge you to do the same exercise with the situations in your life that hypermobility has impacted or things it has taken away. Try and find what has filled the gap once it has taken something away, or what you’ve learned because of it. Don’t use this is a “I have to feel good about my hypermobility” exercise. That’s not what this is about. It’s completely crappy & it sucks that hypermobility has taken away so much from you, from us. We need to acknowledge that, and we need to feel those emotions.

But doing that exercise just brought me full circle, from feeling sad and angry about what has been stolen from me to realising how much of more well-rounded person I am, and what a well-rounded life I have had, because of those challenges. And I can be grateful for that. Both are part of my story. Both are part of me.

Are both part of you too?

Share with us one of your examples of having something taken away, but something being given in return.

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  • Lea

    Just read that in a public place and couldn’t stop my eyes leaking. ?

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