November 16, 2012

What’s in a name?

Posted in ME/CFS tagged , , , , , , , at 6:14 pm by Reva


There are a lot of people campaigning to stop using the term Chronic Fatigue Syndrome (CFS) or ME/CFS and start using Myalgic Encephalomyelitis (ME).  I haven’t ever been one to worry about it.  If I used ME I figure I’d have to explain it.  And how do you say “myalgic encephalomyelitis” when you struggle with basic word finding.  Nope, people have heard of Chronic Fatigue Syndrome, and are less likely to ask questions.  Besides, the complexities of ME sound BAD and I don’t want people to feel sorry for me.

I understood why people wanted to change the terms.  Chronic Fatigue Syndrome suggests there is one symptom.  It simplifies the condition. I’ve probably been lucky not to have been around people who thought of CFS as a real condition, who didn’t write it off as “yuppie flu” or any other of the deprecating terms.

Recently though I’ve started to question my apathy.  Recently it was brought to my attention that my “fatigue” was affecting the people I work with.  Recently I’ve been holding my head in my hands which is causing some colleagues to be reluctant to ask for my help.

Initially I was mortified.  I’m not one to hide my ME/CFS – I think that it would take more energy that I don’t have, to do that.  I do however try to remain professional at work, carry out my duties and do my fair share without complaining about whatever symptoms I might be experiencing on a particular day.  I’m not saying I’m always successful, but to think I had failed to the point it had to be brought to my attention was embarrassing.

Once I got over my initial humiliation and made a conscious effort to hide my symptoms I started thinking that maybe using Blue question markdifferent terminology might have helped me out in this situation.  Maybe had I not been so indifferent about the terminology and taken the time to say I have “myalgic encephalomyelitis” instead of “chronic fatigue syndrome” and explained the complexity of the symptoms, the resting my head in my hands might have been seen as the dizziness/low blood pressure/shaking that it was rather than “just fatigue”.  It’s made me wonder how many of the people who are supportive of my condition actually don’t have as good an understanding of it as I perceive, how do I explain it, and do I need to?