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.

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32 thoughts on “When CFS Meets the NHS and No One Wins

  1. Very pithy post and thank you for sharing your experience – it sounds horrendous, and what you’ve said here and in other posts has given me a much better understanding of the condition you have to put up with. The state of the NHS is terrifying – what was set up to help provide a brave new world and a better life for all has been killed by modern governments and it’s a tragedy. Alas, I fear the result of the forthcoming General Election will not be one I’d favour and I imagine it will make things even worse…. 😦

    • Oh Karen, I dread to think what will happen to the poor NHS in the next five years. Who will staff it if we reduce immigration so drastically? And where will the money come from to fund it, when it’s so cash-strapped already? I always feel funny writing about CFS because I don’t like to think of myself as an ill person, but on the other hand, I do want to raise awareness for all the people who suffer from it, most with far worse than I have to deal with! So, I poke people in the eye with it from time to time. Books next! 🙂

  2. I remember when ME/CFS was disparagingly called ‘yuppie flu’ by the press and not necessarily tabloids, either. I’d love to think that things have moved on by leaps and bounds since then but it seems not, and I’m very sorry to hear it, Victoria. Just navigating the labyrinthine NHS must be exhausting for you.

    • It’s a real shame because things just haven’t moved on, not really. I think there’s a new generation coming up who do understand it because it’s so prevalent now among teenagers. But as for doing anything about it…. it might as well be yuppie flu still with all the disparagement that attracted. Your average GP is pretty hopeless. I’ve had it years now and have my ways of coping, but for all the people who’ve been recently diagnosed, it’s very difficult.

  3. So many thoughts come to mind as I read this, but mostly I am sorry that you have to go through this. I suppose it’s not the top priority or the most visible emergency… but no consolation.

    • Absolutely! The good news is that it’s not fatal, and the bad news is that it’s not fatal. We can live with it for years and years, so why worry? But for many people with the illness, it’s a living death. I am much better than I was, but it still constrains me in all kinds of ways. And I do regularly tell myself I could have much worse! But it would be nice to think that there was something you could do to ease it reliably. It won’t happen in my lifetime, but there IS research going on now. Just got to hope some good comes of it.

  4. This is so heartbreaking and infuriating. I’ve had type I diabetes for 21 years (since I was 3) and the care I’ve received in this country has been pretty good, but I’m beginning to realise there are some underlying related psychological issues that I’d like to address, and it does seem as though the NHS therapy referral system is in poor shape. A uni friend of mine has spent the past two to three years battling through it, and gives a sobering account.

    • I feel for your uni friend, and for you! Diabetes is a very manageable condition, but (as I know) having to manage something all the time is much more of a strain than others realise. It makes everything just that little bit more difficult, so throw in stress or some sort of upheaval and suddenly you’re dealing with all sorts. I’ll keep you posted about the therapy available on the NHS. If the people are good, it’s worth the struggle. We’ll see – and I’ll let you know!

      • Oh, good luck good luck good luck! I hope it all works out. It bloody ought to. And thanks for the kind words. Management *is* hard, and because it’s been my life since I was three, I forget a lot that I’m allowed to find it frustrating and difficult.

  5. Great explanation–very clear how your experience differs from Mr. L’s, and I’m so sorry that you have to deal with such a bureaucratic run-around and lack of current info on treatment on top of everything else.

    • Thank you, Lilian. It is slightly farcical to have to keep answering the same questions all the time, but what about all those people in NHS offices somewhere, wasting their time as well as mine? It doesn’t make any sense. You’d think it must be possible to streamline the system…..

  6. As there is almost nothing on this earth that I hate more than bureaucracy, I had broken out in a cold sweat of sympathetic horror by the end of this post. I’d say it’s adding insult to injury to make you go through this when you are already dealing with a condition that makes everyday things ten times more burdensome, but it’s more like adding an obstacle course to battle fatigue.

    Your thoughts here reminded me of the way I explained my pervasive germ phobia to a friend…at certain times of year, I simply won’t go out in crowds or enter the homes of people with small children. My friend was telling me I should get some help for this fear of contagion, and I said to her, “Do you remember how you felt the last time you had a really bad cold? The kind where you think you’re going to die, or wish you could?” She did remember that. I told her that absent the visible symptoms, *that’s how I feel all the time*, so adding another symptomatic virus on top of that decimates me to the point of feeling like people feel who are undergoing chemotherapy…which I know from having heard several friends describe the complete and utter life-draining exhaustion of chemo, in which they have to budget energy for something as simple as getting out of bed…a budget all too familiar to me.

    I’ll say this for her—she hasn’t ever complained about my germ phobia since then.

    • Thank you for that solidarity, David, it’s much appreciated. You probably won’t be surprised to know that I have germ phobia too. As I used to tell the students, you can get ill and then lie in bed for a couple of days, but if you give that virus to me, I’m going to have to teach with it for the rest of term (which was a hideous prospect on top of the CFS I wasn’t exactly admitting to back then). I know just what you mean about running with a certain level of discomfort that makes an extra virus on top beyond tolerable. I know all about that budget! I’m glad the friend got the message – that did give me a laugh.

  7. a couple of summers ago I ripped a muscle in my left leg and was in acute pain. Getting to see a doctor in my brand new shiny medical practice was impossible until I staged a sit in and refused to move until they gave me an appointment the next day. I was then given a cocktail of drugs and told to ‘double up’ on them for three days to really sort out the problem. I then had the most ghastly month as I had palpitations, was breathless, could barely function and only when an ex nurse friend of mine came round and had a caniption at what I had been given and told me to stop IMMEDIATELY, did I start to slowly recover. It took three months to get back to normal and during that time I forgot what it was like to be well and I was so miserable. I simply cannot imagine what it must be like to suffer all the time and my heart goes out to you.

    Oh and I left my medical practice and joined another so much nicer and friendly who have looked after me beautifully

    • emasl, first of all, thank you for using the word coniption, which cheers my heart every time I read it. And then a big thank you for your sympathetic comment. It never ceases to amaze me, the cavalier way doctors treat their patients. Have they no inkling of the problems heavy doses of painkillers and the like can cause? I mean, if I’ve heard about that, and I have zero medical training, why does it not enter their calculations? Also, CFS has been quite the burden on my liver at times, so I can imagine how ghastly you felt! I am very glad to know that the incident is past you now AND that you have a much better practice to attend. Good news!

  8. It’s very sad and frustrating – the illness and the reactions to them.
    I think that there’s no such thing as it can’t get better unless it’s something that makes you lose a limb or something equally drastic. Just because they don’t know what causes it . . .
    I wish that you will get better and better.

    • Thank you, Caroline, that is so kind of you. You can absolutely definitely improve your situation with CFS. I’m much better now than I was in the past, even if I haven’t got a cure. So it can be done. If doctors think CFS has a big psychological component, then why do they tell people with it such depressing and distressing things? It makes no sense. Still, hopefully things will improve one day, and in the meantime, all of us who have it can keep on trying to find solutions.

  9. At last the NHS is accepting that CFS is real. but clearly your experience shows they are far from providing a support to help people cope with/improve from the condition. My experience with the NHS over the last year has reinforced to me how the medical and nursing practitioners themselves do a wonderful job usually but are hampered completely by protocols and management practices. Like the fact it takes 2 hours to get a prescription delivered so a patient can be sent home and thus free a bed for someone on the waiting list. We keep hearing about the need for more investment but my fear that will just go into more administration and not direct care. As an example of just how the wrong the priorities are, all NHS trusts in England were told earlier this year to begin using a new logo to ‘avoid confusing patients that they were getting services from an NHS trust’ – the cost is eye watering. Will patient care improve as a result – not one iota

    • This is exactly what I’m talking about, Karen. That story about the new logo is just…. well, I can’t even think of a word bad enough. It’s beyond hopeless and ridiculous. And you are absolutely right – it’s direct care where the money is needed. My (possibly unfair) feeling is that there’s way too much administration – otherwise why am I on the receiving end of so much of it? I do think that the staff are mostly excellent and doing the very best job they can under difficult conditions. So why not put the focus on making their jobs easier for them? I suppose it’s easy to be an armchair critic when you’re not in the thick of a huge, sprawling industry. But even so!

  10. This is from the lovely Angela Young (wordpress having a sulk again!):

    I echo ‘You are brave’, as Jeanne says above.To read how you live with CFS is salutary to me who, like Mr Litlove, has a template of health that I’ve been lucky enough never to lose. I know what it’s like to live with a chronic condition but mine (osteoporosis) is (a) manageable and (b) straightforward. Exercise, supplements and an alkaline diet really do do the trick. My bone density levels have stopped declining. I’ve never had anything remotely similar to CFS and I thank you from the bottom of my heart for showing me that I am one of those who can get impatient and who doesn’t understand conditions that (a) often aren’t manageable and (b) are complicated and affect every aspect of a person’s life. I have learned from you not to apply (project) – healthwise – how health things have affected me onto people with different conditions.

    As for the NHS, the people I’ve come across have been anywhere from fantastic to frightful but the other day I was in my local hospital for an investigation (again, I am lucky, it’s treatable) and the nurse behind my head was so kind and so straightforward about what would happen, so caring about the ‘procedure’ – as was the consultant conducting it – I almost cried for their compassion. The NHS is such a mixture of care, compassion and cash-strappedness. Of chaos, clever professionals and chronic underfunding. I was wondering the other day about writing to Jeremy Hunt to suggest that each time we visit out GPs we pay £2, each time we go to A&E we pay £2, each time we go for a routine hospital visit or examination we pay £2. Is that horribly against the free-at-the-point of use point of it all? Would it inevitably keep going up once begun? I don’t know … . But I’d gladly pay just a little more than my taxes contribute if it would be put to good use.

    • Angela, I think it’s perfectly normal to apply one’s own experience to the experience of others, and to judge their outsides by our insides! It’s only when you run up against invisible conditions like CFS that you really have to rethink. And of course when you have something like CFS, what is an essentially harmless strategy for understanding others can feel suddenly insulting and hostile. It’s a funny old combination of subjective positions that it creates!

      When I was at college, the Dean created this new system, whereby if one of the students was so drunk that s/he needed paramedic care, the student was fined £200 subsequently that was donated to the paramedics. I thought this was brilliant. I would be happy to pay a token fee for various services, and certainly at the point of service itself. I can understand that it might be contentious, but the poor old NHS is struggling so terribly at the moment. Mind you, why it couldn’t create an online account for me to fill in my details that all practitioners could subsequently consult, I don’t know.

      I am so very glad to hear about your good experiences, though. That’s hope for all of us!

  11. This post has been resonating around my mind since I read it… and I am not sure I am going to be coherent in my response. BUT I am thinking that I hope the CBT is carried out with your CFS in mind – that is, your phobias are actually not as irrational as they might be in others, because travelling (for instance) exhausts you more than others, so your phobia has developed out of a need to self-protect from the exhaustion. I hope they will realise that, and not try to cure the phobia without thinking about strategies to deal with the fall-out lack of energy.
    Anyway that aside, your post also made me pause too. Yes, your life has changed dramatically due to CFS. Your career, your family interactions, everything. But Mr Litlove and you have made something incredibly strong out of it, and your writing has emerged from it (and perhaps also his courage to follow his dream too).

    Talk soon! xx

    • Dear Kathryn, bless you! You are absolutely right – this CBT has got to take account of the CFS. I have developed these phobias entirely in response to it, and creating some sort of override mechanism is only going to make matters worse.

      And you are also right that Mr Litlove and I have a lovely life, really! Most of the time I think we’re incredibly lucky to be following our hearts like this. It’s when doctors do that thing of, oh you’re all right, you’re managing perfectly well, and I get so mad because all that managing has taken masses of time and thought and energy and care, and it’s never simple. That drives me nuts. But what happens here in this house, with Mr Litlove and I, is good, and cross your fingers that we can make some sort of go of it. xx

  12. Wow, the NHS almost makes American healthcare sound not so bad. Almost. I want to slap your doctor for her insensitivity to your CFS. What a thing to say! I hope you have success with CBT.

    • Heh, it’s always swings and roundabouts, isn’t it? You get good care once you’ve paid (masses) for it and we get good care once we’ve effectively staged our death in the GP surgery with witnesses on hand… There must be better ways! Thank you for your solidarity over the doctor. I was NOT amused.

  13. Hello litlove! It seems a VERY long time since I’ve been here, lots to catch up on…

    You can turn anything into a good story, and my heart bled for you with that unsympathetic doctor, and I marvelled at the weirdness of that overheated abandoned place where you had your meeting. I enjoyed the weirdness, though perhaps you did not… Like Kathryn, I hope that any treatment takes account of your CFS.

    I wish politicians would have a grown-up conversation about the NHS. I’d never have minded paying more tax if it meant that it was better funded. Decent healthcare for all is such a basic and important service for the state to provide. Replacing Trident? Not so much…

    I’ll be thinking of you – big hugs!

    • Oh a grown-up conversation! I would be so happy to hear that about ANYTHING right now, and the NHS deserves one more than most political issues. I’m completely with you. What does a tiny island like the UK want with a nuclear weapon they hope never to use? When healthcare is in such a parlous state…

      It’s always lovely to have you visit, Helen! And thank you for the compliment – turning events into stories is my way of keeping sane… Big hugs to you too! xx

  14. I too have cfs (diagnosed 6 months ago) and left college and a job as a result. Practically bed bound I decided to start up a blog today in an attempt to remain sane. Any support or help you can offer would be appreciated

    • I would warmly recommend that you join a facebook group formed by the OHC (Optimum Health Clinic). It’s all people with CFS/Fibro and it’s got a lot of information and a lot of sympathetic folk on it. I am SO sorry to hear of your plight. I’ve been there and it’s awful. Sending all healing vibes to you.

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