What matters to you?

A question rarely asked.

Normally it’s “What’s the matter with you?”, “In what way are you broken?” “What did you do to yourself to be on crutches?”, “Why can’t you…?”

I have a rare, hereditary condition called Ehlers Danlos Syndrome (EDS), so there are many answers to these questions. It’s a complicated condition that encompasses so many other issues, like Postural Tachycardia Syndrome (PoTS for short), Migraines, Chronic Fatigue, to name a few. And those aren’t even the main issues with EDS. I could go into the details of my health condition, but we would be here a while. It’s something I was born with, but I wasn’t diagnosed until I was in my early 20s. I’m now in my 30s and feel like I have lost 10 years of my life to EDS, and losing your 20s to disability is pretty tough.

Thistle doesn’t care what’s wrong with you, and I mean that in a good way. They know that anyone who walks through their door needs help, and their sole aim is to give that, without judgment or preconceptions. They don’t need to know what’s wrong with you, because they acknowledge that any problem you have is just a small part of what makes you You.

Thistle helps you to realise this for yourself. They provide an environment that allows you to explore who you really are, not just what your long term health condition might be.

When I walked through the doors of Thistle, I wasn’t even thinking about myself. By that point I had pretty much given in to the idea that I was my disability. I had never heard of Thistle. I was there because my cousin had been referred by her doctor, and she had asked me to support her by joining her for her first meeting. Walking through the doors, I instantly felt at ease and welcome. By the time my cousin's interview process was complete, I was sold on Thistle and their approach to life. I self-referred then and there.

Life is for living: Thistle’s motto. On my first encounter with Thistle, this sentiment was awoken in me. I was signed up to the Lifestyle Management course, and here I could go into detail of what this entailed, but I would rather focus on the change that occurred within me. 

I walked into my first Lifestyle Management course the day after my 30th birthday. My mum’s parting words were, “but don’t you want to brush your hair before you go?”

I was fatigued to the point I couldn’t drive anymore, couldn’t think straight, couldn’t make a meal, couldn’t look after myself, could barely keep my eyes open through the day. I’d been like this for over 6 months. Much of this was exacerbated by my heavy medication, but if I stopped taking those the pain was excruciating. So, no, I did not want to brush my hair. I may have given up on myself, but a grain of hope still lingered within me from that first encounter.

Through Thistle I found my voice, a voice I didn’t know I had, and a realisation that I had the ability to help others, as well as myself, through my story. My story wasn’t just about my experiences of EDS, but about the inner strength I had, the resilience, and I started to realise my worth. I started to appreciate my body, I looked after myself, and I tried to pace. I’m not cured of EDS; I never will be. I will still have my good days, and my bad ones. The change is within me and how I see myself. I am not my condition; I am so much more. I will not lose any more time to my disability, and no else should have to either.

Before Thistle, I didn’t have a life, just an existence. Now my life is for living.

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