Alice's Story

Alice is in her early 30s, but for 20 years she lived with a health condition that she did not even know about.

“I was born with a rare, hereditary condition called Ehlers Danlos Syndrome (EDS). As a child, I was told I was ‘clumsy’ and would frequently dislocate fingers, or toes, or even my jaw. As I got older, I began to experience migraines and severe fatigue.

While I was studying for my teaching degree, I found it increasingly difficult to cope with my physical health and became stressed and burnt-out. Finally, I was diagnosed with EDS at the age of 24. Just as my career was starting, I had to leave a profession I loved. I had to stop driving, stop working and eventually I stopped looking after myself.

I had given-in to the idea that I was my disability. People asked, “what’s the matter with you?” “What did you do to yourself to be on crutches?”, “Why can’t you…?” This had a real impact on my mental health."

Alice’s life was dominated by her disability. Medication for EDS left her chronically fatigued but if she reduced her medication, the pain of her condition became unbearable. At a low point in her life, Alice found Thistle.

“Thistle doesn’t ask what’s wrong with you. Everyone here knows that your health condition is just a small part of what makes you You. Thistle helps you to realise this for yourself”.

Alice signed-up for a ten-week Lifestyle Management Course and started it the day after her 30th birthday.

“As the course progressed, I started to look after myself, re-connected with who I am and re-connected with my life. I realised that I could manage my condition and had the ability to help others thanks to my lived experience and newly-discovered inner strength and resilience.

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

“I am not my condition; I am so much more.”

What you can do to help

“I will not lose any more time to my disability, and you can help make sure other people don’t either.

Before Thistle, I didn’t have a life, just an existence. Now my life if for living. You can make that possible for others too.”

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