ME, My Family, and I

I’ve been told (by people trying to be helpful) that I shouldn’t let my condition define me: I am not my syndrome. Probably anyone with a chronic condition or life-altering circumstance hears that at some point.

  • Don’t let _____ define you
  • You are not your _______
  • ______ doesn’t change who you are

All very positive and encouraging.

All (in my case and I suspect many others) completely untrue.

How do I know this? Because how could something you’ve had to alter your whole way of life for not alter your personality somehow too. It’s like saying having a baby won’t change you or your life. Yes it will. The important thing is not to let it become the one and only focus. You need hobbies, interests, distractions. . .

Think of it as a question of adaptation. Can you adapt to this circumstance while keeping the essence of you intact? My difficulty comes when the changes are hard to pinpoint. Do I dislike large gatherings because I’m naturally an introvert and prefer my own company, or is it because I don’t do well with crowds or noise anymore and I’ve got used to being on my own because of the ME/CFS? Would I have done a different course at university – gone to a different university altogether – if I hadn’t had to be practical about my health issues?

Where do I end and the ME/CFS begin?

Does this question come up because I’ve had ME/CFS since childhood, or does anyone who’s dealt with it for years have the same confusion?

As well as the personality wrangling and useless questions of ‘what if’, this issue also brings with it a certain amount of fear. What happens if/when I get better? Thinking about getting better when you’re ill may (consciously or unconsciously) occupy a fair amount of time, but what you may not consider because it’s just too frightening is – what happens if this condition does goes away? That safety-net, that logical reason for why you haven’t done things, is gone. Now what? Those things you said you missed and wanted to do, suddenly you can do them. That’s kinda scary. Not to mention the fear that you’ll be okay for a while and then suffer a relapse, because ME/CFS is never completely gone.

So what can you do about all this? I guess it’s like that thing says about accepting what you can’t change, working to change what you can, and being able to tell the difference between the two.

I can’t change the years I’ve lived with this condition, or to a large extent whether or not I recover, or the fact that I rely on my family for a lot of support. I can try to think about why I’m doing or not doing things, acknowledge when it’s plain fear holding me back, and try not to let it. I can remember to do normal things with my family to make sure our interactions aren’t all health-related. I can work on accepting that although ME/CFS still has – and may always have – a huge impact on me and those around me, what they say is at least partly true: my syndrome isn’t all there is to me.

My life is a three-part orchestra not always playing the same tune:

ME, my family, and I

Now I just have to figure out how to turn the cacophony into a harmony. Easy right?

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