So, The New York Times reports that the Institute of Medicine has suggested a new name for chronic fatigue syndrome. The proposal is that it should be called ‘systemic exertion intolerance disease’, which is quite a mouthful. But maybe an almost-unsayable name is appropriate for an almost-intolerable illness. Basically, the name is designed to reflect a significant symptom of the condition: ‘a sustained depletion of energy after minimal activity, called postexertional malaise.’
I used to describe the experience of the illness as akin to having a leaky car battery. You could charge and charge that battery, but as soon as you started doing anything you could feel the energy draining away. Quicker than seemed possible you’d be reaching the point of exhaustion. Sleep makes no difference. So during term at the university, I’d be struggling by about the second week in, watching my symptoms come earlier every day in the third, and running dangerously on empty from the fifth onwards, knowing I was just going to feel sicker and sicker and trying to manage the panic about that.
The harder you try to push through the fatigue and the illness and keep going, the worse it will all be when you finally stop. In fact the worse it is day in day out. I always thought that if it was only tiredness I felt, that really wouldn’t be a problem. The difficult part is that you feel extremely ill. There’ll be symptoms – nausea, headaches, general aches and pains, sore throats, dizziness, all that sort of thing – but the hard part to deal with is a kind of essence of all illness. You lose control of your temperature, your heart rate, your blood pressure. All of these experiences are invisible. The habitual words do not convey the reality of the feelings. No one will understand.
When I finally came off work, the suggestion from medics was that I try ‘pacing’. I began with no more than one hour’s activity a day, and would stick to that for a week. If all went well, then the following week I could increase my activity by five minutes. And again if all went well, five minutes more the week after that, and so on and so forth. There would be relapses. I remember several years ago, Mr Litlove and I were on a beginners’ tango course. This was a big ask for me – three hour sessions every weekend. Towards the end it was becoming too much and I intended to miss a session. My mother-in-law, who had been visiting, couldn’t understand it – I didn’t want to miss out, did I? If I was tired the next day I could just sleep in. Of course healthy people think this way. For me, I knew that completing the session would mean three days or so in bed, followed by a long, slow, increase of activity afterwards. And it’s hard to enjoy things when you are aware how expensive they are going to be.
I still think of energy as money. Some activities are a lot more expensive than others – for me, socialising, travel and stress are the most costly (this differs from person to person). But everything costs a little – being excited about something is as energetically demanding as being anxious. Laughing takes energy. Engaging in an intellectual activity doesn’t come cheap. Television is more expensive than a book. I have an expensive personality – my normal demeanour is bright, cheerful, engaged. Even being myself was more than I could afford some days, and of course the sense of outrage and unacceptability is so overwhelming when you cannot even behave like your own self that you (I) tend to push through regardless, out of frustration and stubbornness, and build up a large debt that then takes forever to repay.
Doctors have long wanted to push for depression as a key part of chronic fatigue, but I think that’s putting the cart before the horses. It’s hard to stay positive sometimes when you have an illness that is like a punishment for living. And inevitably, the sort of mindset you need to get better – calculating all the time what amount of exertion you can afford, always playing it safe, shying away from anything demanding – affects your confidence over time. Doing something new, or something you haven’t done in a while, can be frightening when you have no idea how you will feel afterwards.
I write about chronic fatigue for two reasons. The first is to raise consciousness, because it is still such a misunderstood and stigmatised condition. I’ve had a lot of time to think about it, and I’m motivated to find ways to express the reality of living with it. The second reason is that for a long time, I felt terribly ashamed of myself. I thought it was my fault. I didn’t want to confess to all the things I couldn’t do without severe consequences. I hated not being able to live like a normal person. But you know what? Denial is a very expensive habit, and I came to realise it was far better for me to accept the condition, to understand it was part of me, like it or not. And it still is a part of me. The past eighteen months have been a very stressful time for me and my family, and for most of it I kept up a reasonable level of activity. This was encouraging – I thought I was seeing the back of chronic fatigue. But then when things finally calmed down towards the middle of November, I felt the familiar old exhaustion. In December I caught every bug going, every time I tried to raise my level of activity even a little. I resigned myself to more of the same in January. This month, I’ve felt more like myself, but I have to calculate my energy every day and make decisions accordingly (hence minimal blogging for which I apologise).
But even the experiences that take the most away, do give something valuable back despite themselves. If there’s one thing this condition has taught me, it is the resilience of the human spirit. Since 1997 I’ve been on a wild cycle of ups and downs, but no matter how low I have been brought, I have always risen back to the surface. There has always been a return of energy, a renewal of appetite, an improvement in my overall wellbeing. And each time that happens, I have felt acutely, exquisitely, how precious life is. I live a very quiet, peaceful life, but living quietly and peacefully with much time for contemplation turns out to be something I cherish and for which I am profoundly grateful. Not many people have the luxurious time and space that I do for observation and for thought. The blessings only come from accepting the truth of the situation, and that can be hard with a condition that is so poorly understood. In the absence of a cure, perhaps a new name (however awkward!) will help the healthy and the sick understand what’s at stake, and deal with it better.