Friday, November 28, 2014


I have often wondered what role a person's personality plays in the development  and management of ME/CFS.

I heard an "expert" on Irish radio speaking, about eight or nine years ago, about Fibromyalgia (FM), a condition that is related in many ways to ME/CFS. He mentioned that it primarily effects the personality type IMP, which stands for Intense, Meticulous Perfectionist.

This, of course, is a gross generalization, and seeks to reduce the explanation of a complex problem to a simple key. But it did get me thinking. I am not that intense, I am fairly meticulous, but not obsessively so, and have some perfectionist tendencies, but am a long way from an IMP.

That said, I can see the rationale behind linking certain aspects of personality to conditions like ME/CFS and FM. In my own case, there are two definite elements that have contributed to the ups and downs of my condition.

The first one is Fear of Missing Out (FOMO). If I look back I can see that this stems from way back, from my childhood at least. I always hated it when my friends - as a group - got to go to see a film I really wanted to see but had to miss for whatever reason, or if my family went on a trip while I was sick at home.

I had a lot of bronchitis as a kid, and was sick quite often, so I think that this contributes to my horror of being on the sidelines.

In 1978 the Pope came to Ireland, and there was great excitement throughout the whole country, which at that time was quite obsessively religious. My mother and aunts had planned to go and see him at an open air mass he was giving for hundreds of thousands of people, and I, at seven years old, insisted on being taken along.

I knew little or nothing about the Pope, but I saw all of the preparations, and the excitement, and absolutely refused to be left behind. Of course it was a miserable experience for me, we ended up having to walk for miles because there were so many cars parked there, it was raining and I was exhausted and bored to tears when we finally got there. My mother had told me what it would be like, but I was insistent on going, just in case I would miss something.

I would spend days or weeks stewing over some fun event that I missed for whatever reason. The reasons for my hatred of feeling left out are probably complex and would need therapy to dig out, but it is something that has always been with me. It is anxiety that the world is having a great time without me, coupled with an intense regret that I didn't take a different course.

Of course this is lethal with ME/CFS. On many occasions I have pushed myself too far at the wrong time, just because I couldn't bear to miss anything. This is usually after a cold or infection, when I should be resting, yet once I start to feel a little better I can't wait to get back to normal life, and often end up crashing.

It is a pattern that has repeated itself over and over again, despite my knowing what will happen if I don't take care. It happened just last week, in fact. I got this cold, streaming nose and heavy chest, and took a few days off. I soon started to feel up to more activity, and although I thought I was taking it easy, I always forget how much rest I need after an illness. By last Wednesday, after I had gone back to work on Monday and Tuesday, I got out of bed that morning and was dizzy and nauseous, and spent the next two days in bed, utterly drained.

I am still recovering now, two and a half weeks after the initial cold. The irony is that in pushing myself to get back to activity, afraid that my life was passing me by, afraid that I was going to miss things, I ended up missing much much more than if I had just taken my medicine and gotten over it earlier. Plus I would have missed less work and lost less money.

Linked to this, I believe, is an Exaggerated Sense of Responsibility (ESR). It could be connected to being the first born in my family, a lot of my friends are also the eldest in their family and share this sense of responsibility and duty.

I am involved in a local voluntary cultural organization, and also organize a series of night classes, both of which I have built up largely on my own in recent years. So when I get sick, it is very difficult to let other people teach my classes, or run events that I have planned. I hate cancelling classes with my private students, and having to let people down.

Somewhere, of course, this is tied to self-esteem and self-worth. I don't want people to think less of me if I have to cancel things, and I am not good at delegating decisions or work to others. I don't want to be the guy that lets people down, misses things, is unreliable. And of course that is exactly what ME/CFS makes me, someone who may have to let people down, may have to miss things, may have to be unreliable.

So these twin factors, FOMO and ESR, are central to my personality, they lead me to push myself when I shouldn't, and make it difficult for me to just rest when I need to rest. I don't want to be this vulnerable, fragile creature, always taking time out, always crying off, constantly telling people that I can't. I want to be the guy that can. And I am not, and that conflict is difficult to get around, and has caused untold problems for me in trying to deal with this condition.

I have to stress that I am not suggesting that ME/CFS is caused by my personality, or by anyone else's. It is clearly a physiological illness, with underlying physical causes, not a personality disorder.

What I am saying is that ME/CFS - perhaps more than most conditions - has to be managed very carefully. Management is vital to being able to live with this thing, and how you adapt your life to your illness is central in managing to survive. And what your personality is like is key to this, to accepting the compromises that you have to make, to dealing with difficult times in your life, to being sensible when you need to.

And my personality, and the drive to succeed, and to appear to be strong, in control, responsible and competent, has often not been a help to staying well, in fact it has caused some major collapses along the way that could have been avoided.

I have gotten better over the years, I have had to. But just last week has shown me that I have a long way to go to get over my fear of missing out, my exaggerated sense of responsibility, my troublesome, restless, unquiet personality.

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