When CFS Meets the NHS and No One Wins

So, last week was an unusual one for us because Mr Litlove was unwell. I always find it intriguing when he falls ill, because I get to witness what happens when a healthy person goes through a virus. Mr Litlove is a stoical type on the whole, but being ill makes him anxious and miserable, especially when, as in this case, he has an unpleasant symptom like stomach cramps. Then he struggles as anyone would not to make them worse because they are unfamiliar and unpleasant and causing him some concern. But the moment that those symptoms start to abate and he begins to feel better, I can almost see him overlaying the diminishing symptoms of illness with his memory of good health. He’s only been away from it a few days and now it’s a template he can hang onto, drawing himself nearer to normal with the simple confidence of its being his natural and typical state.

These things interest me, because the experience of chronic illness is so different. Last Friday was ME/CFS Awareness Day, apparently, and thinking about what it might be useful to make people aware of, it’s the effects on a person’s soul (if you like) of ongoing illness that are so often misunderstood. When you have an illness like CFS, you are at the mercy of a lot of symptoms which, if suffered in isolation, as Mr Litlove suffered some of them, are quite normal and readily overcome. But the effect of CFS is to hold you hostage in illness and therefore also in that anxiety state, with symptoms refusing to go away, and new ones popping up all over the place, and no diminution to give you hope that wellness will return. As the days stretch into months and then years, you forget what normal looked and felt like. You have only memories of illness and fear and they increase every time some fresh hell occurs to you. Anything stressful is that much harder to deal with because the inner ‘pint pot’ that contains stress is already half full. What kind of a monster would I have been if I’d told Mr Litlove that his stomach cramps were all in his mind, and that he should stop whining about them and just manage the best he can? And yet that’s what a lot of CFS sufferers get told, and mostly from the medical profession. Oh, doctors might couch it in more neutral terms, but often with the force of their indifference, it’s what they imply.

I last saw a GP back in February with the usual range of things that were not in themselves worrying, but were dragging me down because they came all at once and hung around far longer than necessary. I had the throaty/chesty-thing I’d caught the previous November that was still recurring (mostly gone now), styes in my eyelid (still got those), and a range of perimenopause symptoms which were making the CFS worse (they’re not going anywhere either). The doctor told me that these days they ‘didn’t think CFS was all in the mind anymore – there’s definitely something there.’ But that ‘no one can cure you so don’t believe anyone who says they can.’ Just pause for a moment here and consider that I have had chronic fatigue syndrome for almost 20 years now. I lost an excellent career to it and live a much reduced life; I’ve visited my son in London once in the four years he’s lived there; I have all kinds of skills I would love to contribute to my society but cannot. And this is what the doctor thinks to say to me? That I should give up on the thought of getting better? (I relate her words to you verbatim, with nothing added or taken away.) In fact, there are things that you can do to help with CFS, but the NHS is about 15 years behind, and the tactlessness, not to mention unhelpfulness, is quite breathtaking. I must admit that I was annoyed, and I felt determined to make the NHS do something for me. I’ve never complained to a doctor about the lack of help or support in all these years, or demanded testing or any form of possibly experimental treatment. I really felt they owed me.

However, squeezing something out of the system is not easy. I asked if I could be referred to the CFS centre at Peterborough (about 30 mins away), but the doctor refused on the grounds that I was probably doing all the things they might suggest already. Which was pure assumption because she asked no questions. So then I asked whether I could have CBT counselling, which I had seen advertised widely as a new NHS service. The doctor was not optimistic but said she would put my name forward. Naturally nothing happened, and I presumed that the doctor had forgotten about me the moment I’d walked out the door. So imagine my surprise when an appointment for an ‘assessment’ came through last week.

The assessment was an other-worldly experience. I drove to the far side of the city and found, in the middle of the wilderness beyond the outer ring road, a dilapidated collection of buildings that held the breathless silence of a ghost town. It was as if I’d stepped back in time to 1955 and been sent to the ramshackle remains of Bletchley Park. Half the buildings were derelict with broken windows and overgrowing foliage, as I found in my tour, having taken a wrong turn which proved impossible to undo. I had to exit the complex and come in at the front again. When I did locate the building I required, it seemed completely empty. Eventually a young woman came to find me and take me to her room. We passed a number of rooms off a corridor, some set up like classrooms, others just empty spaces, but everything seemed decades old and abandoned. However, something was working: the heating. According to the young woman, the therapists had been freezing all winter, asking if the heating could be put on, and now that the weather had finally warmed up, someone had flipped the switch. In consequence I felt I was being cooked. It was so hot in that room that I actually had to ask if I could leave and walk up and down the corridor for a moment. Really, it was almost unbearable.

But we sat and sweltered through an hour of questions. I had gone in asking if I could receive CBT for my phobias. In decreasing order I experience quite extreme anxiety and fear of: medical treatment, travelling and socialising. The latter I’m not exactly afraid of, but I find it exhausting because so often being social means a certain level of performance. By the time I left, we had agreed that I would receive CBT for my phobias. The only ‘decision’ I’d made was to have this CBT online rather than one-to-one, so why I’d needed to be assessed, I had no idea. In retrospect, I suppose that the NHS waiting list for treatment is so long that an assessment is required to see if you’ve become a risk to yourself since the initial referral. If I’d wanted one-to-one treatment, I’d have had to wait another eight weeks. I have to say my heart went out to anyone who wanted to use this service who was really at the end of their tether. It would be enough to push you over the edge.

So I left the tropically heated ghost town behind me and returned home. A few days later I was invited to sign in to the service and having done so was instantly sent an online questionnaire to fill in that was essentially all the questions I’d been asked in the assessment. This was to ‘match me’ to a therapist, clearly not the young woman I’d met, who was also clearly not able to pass on the details I’d given her (though I should point out that she was very nice and doing the best she could under trying conditions). So this is the NHS: hobbled by administration, cumbersome and complex and slow, with the resources that make you think you’re living in a third world country. There must be better parts of it than I’ve seen this past week; here’s hoping I’ve just had a less-than-ideal experience.  I mean, my normal experience of therapy has been to ring up a therapist, have a chat on the phone and then make an appointment. That’s it. Well, I guess we’ll see what happens next.

What, then, to take from all of this? Well, I suppose I’d like to send a shout out to all those suffering from CFS for the Awareness Day because it’s a pig of a condition that still has a lingering stigma. But I’d like to to extend that greeting to anyone suffering from an ongoing chronic condition, who feels like they have exhausted the patience of their doctors, but who is anxious and fearful because managing life around ill health is all that can be done. Mr Litlove is one of the lucky ones. If you fall ill and it’s a passing thing, just a part of wellness as it were, then you are very lucky.  And if you are that lucky, don’t assume that other people who can’t do what you can do are lazy, morally weak or malingering. No one wants or chooses to be ill; it’s always distressing to experience. And finally, what on earth are we going to do about the NHS? Having come up close to it, I’m under the impression that its inner chronic fatigue is worse than mine.