In members' own words

Facioscapulohumeral muscular dystrophy (FSHD)· Diagnosed as an adult

Two things, and they turned out to be connected — because it was the people who pointed me towards everything practical. The people. Talking to others who understood the condition changed how I felt about having it. There's a difference between sympathy and recognition, and I hadn't appreciated that until I got the second one. People who've been through it don't need things explaining and don't get uncomfortable. That did more for my mental health than anything else — not because it changed the condition, but because it stopped me feeling like an odd case on my own with it. The advice. This mattered just as much, and it's the part I'd never have worked out by myself. I didn't know what existed, what I was entitled to, or who to ask. Being pointed in the right direction each time saved me a lot of wrong turns. Three things came out of it: An occupational therapy assessment. Someone came out, looked at how I actually lived in my house rather than how it looked on paper, and a stairlift was fitted as a result. That single change gave me back the whole of my own home. Help with benefits. I had to stop the job I was in, and I was supported through claiming Universal Credit. Doing that on your own, at a point when a lot is already changing, is not easy. Having someone who knew the process made a real difference. A grant for aids. I was pointed to the right place to apply, which I'd have had no idea about otherwise. The money existed; I just didn't know where it was or that I could ask. That's what's let me carry on living as normal a life as possible. Not pretending nothing has changed — just arranging things so that what has changed gets in the way as little as it needs to. Every one of those three bought something back.

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