A couple of months ago, a lovely and well-meaning friend commented to me that I could get a job as a curator of a gallery when I finished my masters. At the time I responded by flippantly agreeing that I could, if they were happy for me to do the job from my bed. The suggestion was so obviously well-intended, that I did not even consider trying to explain how far from my true capacity a full-time job was.
Last week, over on velo-gubbed legs I read this extract from NMJ's soon to be published novel which stars as its main character, a young woman with CFS/ME.
Extract from 'The State of Me' (Ch 34) (Main character, Helen Fleet, talking): "I’m always measuring out my energy behind the scenes, but people don’t see it. They see you at a party and think you’re fine, they don’t see you resting all day to be able to go, and being wrecked all next day because you went."
And I realized that is the problem - they don't see how our life is, day by day. Hopefully, books like NMJ's will help with this problem. I think it is our responsibility to let PWOCFS (people without CFS) in to our lives so they can see what it is really like, because it comes back to people's expectations about a person who is ill, or a person who is disabled.
At present, the understanding seems to be black and white, an all or nothing condition. So if I can apply to do a masters, and be admitted to do it, then I must, basically, be normal. Even if I am currently in my fourth year of a three semester (full-time) course. I'm not sure what this means they believe - do they think I am faking? Or do they think I am recovered? I'm not sure. It's been a long time since anyone really suggested to my face that I wasn't ill, although I still occasionally sense someone eyeing me suspiciously, as if, perhaps, I am exaggerating wildly about the level of difficulty I have to live with.
There is another thing I think people who don't live with a chronic condition find it difficult to grasp. It is the fact that just attempting something when you have a chronic illness, is actually succeeding. If I sat at home and did not try to do things, then sure, I wouldn't fail at them. However, I think I might be failing at living my life, because setting goals and working for them, is as much a part of who I am, as being female is.
My husband commented to me the other day, that the chances of me actually completing this masters have never been better than 50:50. It made me stop and think, and I realized he is right, and I remembered that in the beginning, I was very clear about that in my own head (of course I didn't tell anyone at uni that!)
The thing is, I love to learn, and you don't need to complete a masters to still learn a lot from participating in the programme. If I don't manage to graduate, I will still have vastly increased my understanding of art, and my own practice. It's about the journey, as "they" are always saying. But I think "they" might also believe that I have failed if I don't finish. And maybe I will have, but that's okay, because you can't fail if you don't try...and I'm definitely going to keep trying.