I’ve always been a good girl. Always got straight As. Never failed an exam in my life. I worked hard, and I didn’t ever break the rules – apart from a bit of teenage experimentation, which is practically part of the rules. I was so rarely told off at school that I still go hot and cold, over twenty years on, when I think of the few occasions on which I did catch the teacher’s ire.
If you have ME/CFS, you may recognise yourself in this description, and you may well have been told that your ‘Type A personality’ helped to cause your disease. You cared too much and you pushed yourself too hard; it’s your own fault, really.
The doctor at the King’s specialist CFS unit put it rather more nicely. He said, you should recognise that this approach has brought you some advantages in life. And he was right. I have a first class degree from the University of Oxford, and over the course of a decade I built a successful career in consultancy and research. But even though he was kind about it, he still saw it as part of the problem.
A bit of an aside – this Type A issue was used for a long time by the dominant school in the UK as evidence that the illness is psychological in origin. Now that we know it’s not, I still wonder if having that sort of personality means you try to push through for longer, which is what makes the illness take hold. Or maybe it’s a genetic link higher up the chain – or maybe the Type A issue is just a myth. And whilst I’m here: the same set of thinkers suggested that a higher prevalence among women also meant that it had to be psychological – you know how hysterical, prone to over-exaggeration and soft we all are. In fact, this supplies further evidence that it’s an immune dysfunction at its core; women have more complex immune systems due to child bearing, and hence have a higher incidence of all auto immune diseases.
End of aside.
Back to the point, and the point is this: when I worked hard for my exams and tried my best for my London clients, I was adhering to a particular belief system. Actually, I think almost all people hold this belief, without knowing it. Maybe those of us with a Type A personality (if there is such a thing) just hold it a little more strongly, take it a little more to heart.
The belief is this:
If I am good, my good behaviour will be rewarded.
Simple enough, yes? And possibly true to an extent. But it gets dangerous. Really dangerous.
The if-I’m-good-then-good-things-will-happen belief breaks down when it comes to chronic illness. It’s the chronic aspect that’s the killer. Everyone knows that stuff happens; it’s how you deal with it, right? But chronic means it isn’t going away. Your life is going to be like this now. There is pain (a lot of it, all the time), and loss (a lot of this too, as we shall see), and each day is a struggle. Your daily experience becomes more of a struggle than a well person can imagine, to live a life that is far less than a well person could accept.
And according to the logic by which you’ve lived your life, it must be your fault. You weren’t good enough, and so bad things are happening to you.
You start off thinking it’s your fault in the sense that you shouldn’t be letting your illness get to you. You’re weak, you should be working, even though you worked yourself to the bone trying to carry on through it. Later, you are told that it’s your fault BECAUSE you’re a high achiever, because you believed in that system so fully and worked for it so hard. And that’s when it really starts to sting.
The breakdown of this belief system can cause some real problems. I was upset on and off for a long time, simply at the fact of my illness. I felt that I’d lost so much, and I didn’t know what I’d done to deserve it. But I worked on it and I grieved and over the course of a year I got quite a lot better, physically – in fact I seemed to be on the path to recovery – and I thought I was doing OK. Maybe the system was OK after all.
And therein lay the problem. My belief system was still intact; I just hadn’t yet followed it through to its logical conclusion. (Can you see where this is going yet? You will, in a minute.)
Two years in to the illness, my boyfriend ended our relationship. I lost my home, my recovery and my ability to live independently, all in one fell swoop. And that was when I finally put my money where my mouth was: I got depressed.
To be continued.