Mind and Body

Your mental and physical wellness with ankylosing spondylitis

The Butterfly Effect of Ankylosing Spondylitis

My Dad was recently diagnosed with ankylosing spondylitis. Having to deal with this as a family and accept that there is no cure has brought us closer. At first I thought there would be a huge overwhelming feeling of hopelessness amongst us all, everyone giving each other sympathetic knowing looks. But it’s been the complete opposite.

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Incurable, the word that changed my life

I sat at the other side of the desk to my rheumatologist, something I was used to by this point. But this wasn’t quite the normal visit. My mum sat slightly behind me, questioning the Doctor on what the solution was to all my problems. Nothing could prepare me for what I was about to hear. “This condition is incurable.” My heart sank.

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Doodles Dealing with Arthritis

When I learned about ankylosing spondylitis it was immediately made clear that it’s not simply “back pain”. I can relate. I’m so sick of people assuming I’ve just hurt my knees somehow. Yet, these personal frustrations have helped me realize how important it is to listen to people with different experiences, and not immediately try to fix them, but learn from them.

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Keep going, there’s a hope in motion!

After looking at maps for hours, I developed a desire to go out there, explore and discover. So, in 2009 I decided to cycle from Switzerland to China. Since then I’ve cycled more than 40,000km, crossed 28 countries, exchanged thousands of smiles and fulfilled many incredible dreams!
However, my world was shaken last year. I discovered a new companion in my life called ankylosing spondylitis.

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The Gorilla In Your House

Acquiring a disability is a bit like getting home to find there’s a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to “what you’ve got ‘ere, mate, is a gorilla, and there ain’t really a lot what we can do about them, see…” before sending you back home to the gorilla’s waiting arms.

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Ankylosing Spondylitis may be a curse, but it’s not your Azkaban

Do you remember that scene in “Harry Potter and The Philosopher’s Stone” when Hermione says Petrificus Totalus and Neville’s body becomes stiff and rigid just before he falls to the ground? Being diagnosed with a disease can feel like this. Like a curse has been cast upon you and paralysed you. Ankylosing Spondylitis (AS) especially so, given its hallmark symptoms of pain and stiffness. 

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Deducing my Ankylosing Spondylitis

As I am a 17 years old, in my years of youth, I basically think I know everything about everything, (as every teen does) but, I can honestly admit, I had not a clue what ankylosing spondylitis was until a few years ago when, ironically, my knowledge expanded.

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Mind Management

By reading this, you’re probably hoping to hear a positive story you can connect with. By reading this, you perhaps feel the need to be inspired or be given directions to follow. But by reading this, you have already taken the first steps down your own path, as you’ve decided to seek help, learn about your condition or take comfort in knowing you’re not alone. So give yourself some credit, you’ve done well.

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