What matters to you? A question rarely posed.

Posted by Alan Davidson on 02-10-2019
What matters to you? A question rarely posed.

Alice blogs about how the Thistle Foundation helped her with self management of a long term condition

Normally it’s “what’s the matter with you?”, “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 something I was born with, but I wasn’t diagnosed until I was in my early 20’s. I’m now in my 30’s and feel like I have lost 10 years of my life to EDS, and losing your 20’s to disability is pretty tough.

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. Much of this was exacerbated by my heavy medication, but if I stopped taking those the pain was excruciating.

I walked into my first Thistle Lifestyle Management course the day after my 30th birthday.

Thistle didn’t ask “what’s the matter with you?” They asked “what matters to you?” They know that anyone who walks through their door needs help, and their sole aim is to give that, without judgment or preconceptions. They acknowledge that any problem you have is just a small part of what makes you, You.

During the course, I started to appreciate my body. I looked after myself, and I tried to pace.

Through Thistle I found my voice, a voice I didn’t know I had, and I realised 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’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.

More information on Thistle:

www.thistle.org.uk (this takes you away from our website)

F: @thistlefoundation

T: @thistlecharity

Written by Alan Davidson

Policy Officer

Person Centred Team, Scottish Government