I have chronic fatigue syndrome. I disclose it because I want to write about my experience, in particular experience of medical care. It’s experience of normalisation. I hope this account offers space for reflections.
I’ve thought about this post for some time. It’s not easy, much less easy than I thought it would be. I don’t want to be perceived as ‘the one with CFS’, so I’m not going to tell you in any detail what chronic fatigue syndrome (CFS) is for me. I want to focus on how my ‘story’ has been received. As much as possible, I want to write as a researcher not the patient. So, for example, I am not going to explore what it means when your entire body has been in pain for just over a year. Day in, day out.
1. How it all started.
It all started with an infection. After a while the infection was gone, but the pain and fatigue was not. In fact, it was getting more intense. Bloody hell, all of a sudden I really couldn’t run. But, more to the point, this is when my ‘frequent flier’ visits with the doctors started. And what I heard was striking. It was all normal. After infections, people experience fatigue, nothing to worry about, that’s just the way it is. I can’t remember how many times I saw a doctor at the time and I can’t remember how many times I heard it. But that wasn’t the bad bit. It was visit after visit when I was being told I was looking for an illness. Apparently, I was completely healthy, just having some undesirable effects, nothing to worry about.
It was like banging my head against the wall. I was feeling like shit (do pardon me), there were days when I could barely move, spending hours on the sofa. I was literally too tired to sit in front of my computer in the study. And yet, what I was getting was basically the ‘it’s normal’ story. Well, also the ‘you’re mad’ story.
I’m a very well-spoken, very well educated person. I’ve been trained and experienced in looking at reality critically. I’m also fairly used to being wrong. But in this case, to be completely honest, I was being driven mad. The gap between how I felt and what my doctors told me was way too large to ignore or just dismiss as insignificant. I was either mad or they were seriously wrong. Thank God, I am too persistent and bloody stubborn to give up easily.
2. The shift.
And so the shift came. Well, it didn’t come, really. I made it. After a few months, I went to see my doctor again and I started shouting. Oh, I really stopped caring. Lo and behold, I got a reaction and it was beyond infuriating. The doctor decided I hadn’t told him about the pain. I was shaking, really, I was fantasising about….I’d better not tell you. He ordered an extended battery of tests, he apparently decided I wasn’t crazy after all. And no, he didn’t apologise.
This is the moment when CFS was mentioned the first time. Well, no, it wasn’t like that. It was the possibility of a possibility of something that occasionally might, strangely enough, be called CFS. Interestingly, it was a locum doctor who had mentioned it in his notes. And my doctor mentioned it to me as mention from the other medic. Complicated? Oh well….
Me? After reading half the Internet, I got scared.
But for the me-the-researcher came another fascination. After normalising how I was feeling came a new normalisation. This time it was normalisation of, yes, you guessed it, how I was feeling. I was no longer crazy, which is a bonus, but now nothing could be done. So, from ‘yes, it’s normal how you feel’ came ‘yes, that’s the way you feel’. Tough shit, so to say (do forgive me).
Oh, for….OK, for pity’s sake, do I catch a break? Apparently not. Now, I’ve been told I have to accept it and, wait for it, ‘rewire my body’. How do I do it? Oh, who gives….Time and again, I heard that I simply feel the way I feel, there is nothing to be done, it’s just the way it is. And I do wish my blog were not a very polite one….
And this is where I am, but it’s not the end. I want to comment on a few other things.
Whenever I hear about empathy, I want to scream. These discussions about empathic doctors, ways in which to show it. Oh, please, do shove it….Yes, I was shown empathy. Mostly in the form of a pained expression on the face of the medic. The well-studied long-lasting look, much like in a cartoon, the medics’ eyes were getting larger and larger. Sometimes I wanted to suggest background music.
But, you see, empathy is not about making faces. Empathy is about something completely different. Like understanding that when I say I cannot move, you don’t say that it’s just normal. No, stories of watchful waiting didn’t do it for me. They really didn’t.
I’ve exercised for the last 27 years. And I mean: exercised hard. Before ‘the infection’, I had 6-8 sessions a week (but sometimes 5, sometimes 11). Stopping cold was extremely difficult and, of course, it meant putting on weight. But what was really infuriating was not that it was ignored, but that putting on weight was frowned upon. I was looked at like I was stuffing my face with doughnuts! Do you ever, like ever ever, listen to me?
My Twitter timeline is full of medical advice about exercise. Not only does exercise do wonders, but I will die a premature, slow and painful death if I don’t exercise. And so, could I humbly suggest not saying: ‘Do exercise’, but ‘Do exercise, if you can’. You have no idea how much I would like to go for a run. You really don’t. And I really can’t.
Not so long ago I ran half-marathons in the morning (some weekends only though) just for the heck of it. Now, I go for a 15-minute walk, ending it with a 100-metre run, after which I recover for at least an hour, sometimes considerably more. And I could tell you so much more about exercise.
Whenever you tell me to exercise, you tell me it’s obvious. It’s not. For me exercise is far from normal. I fall apart after exercising.
I’ve never been keen on this, but now I hate it with a vengeance when I hear about ‘living with chronic illness’. Apparently I’m not supposed to say I suffer. And you know what, I don’t live with CFS. I suffer. I suffer every day, every minute when it hurts. In fact, I don’t want to live with CFS, I want to construct it as outside me, not belonging in my life. The moment I say I live with CFS, I will give up. I will accept it as part of me and my life. No, I reject this part of normalising CFS.
There is so much I could write here, but if I did, I would become a patient. I don’t want to. It’s enough to suffer patienthood in front of a doctor.
How to end? Well, this post is not supposed to be constructive. I’m really way beyond being constructive. I can barely keep it polite. I’ll consider being constructive when you stop accepting my misery. It’s very easy to suffer another’s pain, you know.