Saturday, 15 April 2017

If the label fits

I run a support network at work for employees with conditions where chronic fatigue is a major symptom. We've got 93 members now, mostly with CFS/ME, some with MS, some with EDS and about 15 other conditions. Every month we get together (virtually speaking - we're spread out all over the country!) and talk about what we're working on as a group, and chat about issues that affect us, share advice and generally support one another. It's the absolute best bit of my job, I love it, and love how we make a difference to each other's lives.

This month an interesting topic came up about accepting labels. We have a new member who has recently been diagnosed with CFS and they said they were struggling to come to terms with it, something we could all relate to in one way or another. There were people who'd found it easy once they had a diagnosis, an explanation for the symptoms and a plan for what next. Then there were others who had counselling to help them handle the new situation they found themselves in. Everyone had a story and their own way of dealing with it. Everyone had had challenges at some point. 

I spent most of 2015 waiting, waiting for doctors and hospital appointments, waiting for new medication to work, waiting to find out once and for all what was causing all my problems. Why I could barely get myself out of bed some days, why I couldn't read a book, couldn't watch a whole film. 

When I finally had the diagnosis, I had a label. I'd wanted that for so long. Part of me was relieved, I knew I'd been through so many tests that it had to be the right label, but it didn't give me the answers I wanted. No magic fix just because it had a name. 

It's taken me a long time to get to where I am now, somewhere in between accepting the label and fighting it. Yes, it's a big part of me and something I have to be aware of all the time. But I'm lucky that my recovery is going pretty well, it's going in the right direction and I continue to improve albeit slowly. I'm a long way off "well" but I don't want to keep this label for any longer than I have to. Maybe one day I'll get to ditch it all together?!

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