(For some time I have been resisting focussing this blog specifically on people living with CFS/ME/CFIDS. But when I resist something it’s usually a sign I should be doing it ;-), and this is no exception. So I have decided to now focus on writing blogs for people living with CFS because that is what I know most about and I believe I can make the most difference by focussing on CFS – and making a difference to as many people as possible is my mission in life. The following outlines the reasons I have been resisting narrowing my focus from living with illness and pain to living with CFS. It was written as a personal journal entry that I’ve decided to share with my you, my audience)
I would love to somehow help people with CFS/ME to suffer a little less than I did in the early years of my own CFS. I know my 20 years experience managing CFS has taught me immeasurable things that I could pass on to others going through the same thing. I know I would have loved to talk to me now back when I was struggling to cope with the effects of this mysterious illness (that the “experts” can’t even agree on the name of, let alone the treatment!!). Yet even though I know it’s what I should be doing I am resisting it. Why? I ask myself. The answers could be many, but I think it’s mainly two things.
1. I decided a long time ago I was not going to let this illness define me like it had done previously. I decided it was not going to become my life and that my life was going to be more than an illness. I have subsequently achieved that goal, so making my life’s work purely about CFS and its sufferers goes against this promise to myself (even using the word “sufferers” goes against my grain! 🙂 because it implies victimhood – see my blog Refuse To Be A Victim Of CFS)
2. Coaching others with CFS, blogging and podcasting about it, all forces me to remember times in my life I want to forget. It forces me to remember sadness like I have never felt before, grief and depression as black as it gets, fear that stopped me in my tracks and loneliness I never want to feel again.
But maybe that’s exactly why I have to do it. If even one person has the trauma of this illness reduced by me sharing my experience, then it’ll be worth it. I don’t know exactly how to do it, but I know I have to try!