I know this is going to be controversial so, please, I’d ask you to think about it, rather than just react and post a snotty comment. Constructive comments, though, are very welcome.
This was written primarily from the perspective of a Myalgic Encephalopathy (ME), sufferer (that’s me), though it applies equally to other chronic illnesses, especially my COPD, the precursors of which I have had all my life (Ron’s Rants passim). For US readers, ME = CFS.
The following extracts are from an article in the Journal of Psychosomatic Research, Volume 61, Issue 5 , November 2006, “Well-being in patients with chronic fatigue syndrome: The role of acceptance.”
They reflect, and endorse, insofar as it relates to chronic illness and pain, the philosophy – if that’s not too grandiloquent a term – by which I’ve tried to live my life:-
Objective: Research in chronic pain patients has shown that accepting the chronic nature of their illness is positively related to quality of life.
The aim of this study was to investigate whether acceptance is also
associated with better well-being in patients suffering from chronic
fatigue syndrome (CFS).
Conclusion: We suggest that promoting acceptance in patients with CFS may often be more beneficial than trying to control largely uncontrollable
I agree 100% with this, but how is it to be accomplished in ME or any other chronic illness and painful illness?
I believe that the particular mindset required to bring this about may be inherent, not acquired, though it may provide the trolls at NICE with another lever for the imposition of CBT on ME sufferers, which, in this instance, may actually prove beneficial; I will always maintain, though, that it’s not possible for CBT to cure a physical illness. If, indeed, it can be a learned response to illness.
With a little effort, I think it can be – changing a long-established mindset isn’t impossible. For example, I used to be a dreadful worrier; now I’m not. I trained myself not to worry about things over which I have no control, thoughts about which would go round and round in my head, like manic hamsters on a thousand squeaky wheels, when I was trying to sleep, and never accomplished anything except keeping me awake half the night. I won’t say it was easy, and it took a few years, but now I worry about very little, and never about stuff I have no control over – life’s just too short.
To learn to live with ME (or COPD, or any other chronic, incurable, illness), I believe that you need to consider it in an almost symbiotic light – an intrinsic part of you, something that, of necessity, you share your life with – rather than as something by which you are defined or which you see as an imposition – and which isn’t going to go away any time soon, if at all. It also means not frittering away your life – and income – not to mention sanity, on an ultimately futile quest for a cure. There isn’t one for ME any more than for COPD: get your head around that fact – learn to be comfortable with it.
Yes, yes, I know there are people out there each claiming that they have the only remedy for ME, which they’ll tell you about in exchange for substantial sums of money. Just like the returning crusaders, who brought with them enough fragments of the “true cross” to rebuild Noah’s Ark (and, probably, enough fragments of Noah’s Ark to build a… well, you get the picture), and no more trustworthy. There is not, at this time, any substantiated cure for ME, and I believe, as I’ve said before, that there will not be a cure until we have an identified cause, and maybe not even then. After all, we’ve known what causes the common cold for many years, but are no closer to a cure. But I digress…
With ME, as with any other chronic illness, you have to reach a state of mental, as well as physical, equilibrium – neither giving in to it, nor wasting energy continually fighting it.
I am not saying that if you think positively you’ll feel better. You won’t, that’s bullshit, nor is it anything to do with “changing the way you think” about illness, which some claim can be a cure (I don’t accept that), but I believe very strongly that if you’re going to hurt, and feel terrible, anyway, you may as well do something useful and/or enjoyable with your life (within the limits of your physical ability, of course – no matter how much I may want to, I’m never going to be able to walk the Pennine Way again, for example) – you’ll still hurt and feel terrible, but at least you’ll have accomplished something and maybe had a little fun. And I know from personal experience that such distractions are invaluable in coping with unremitting pain.
OK, you simply aren’t going to be able to do as much as you could when you were well, and there may well be a degree of suffering involved, though there probably would be, too, if you did nothing – for example, I’m in excruciating pain (trapped sciatic nerve), whether I sit round feeling sorry for myself, or get out birding, or just go to the pub, but whatever you are able to do, even if it carries a penalty in terms of pain and tiredness, it’s way better, physically and psychologically, than doing nothing at all. That’s what I believe, anyway.
Most disabled people I know, including some with ME, and almost all doctors of my acquaintance (a lot, over the years), would disagree with me about this. Physiotherapists, on the whole, have tended to agree enthusiastically (see footnote**), as did the psychiatrist I saw for several years when I was trying to get a diagnosis of what turned out to be ME (the purpose being to prove to my idiot doctors that I was not mentally ill).
I’ve had the precursors to my COPD all my life, but I’ve always tried to stay active and maintain a high level of fitness (cycling, rambling, backpacking). My doctors have been horrified but my physios were always extremely enthusiastic. I think it’s the fact that I was extremely fit before I became seriously ill with ME and then COPD that has delayed the onset of serious disability until, well, now. Doctors tell my that I am far better than I should be given my medical history, and I have no doubt that this is entirely due to not “giving in” to it, and being as active as I could.
It’s only now that inactivity is being forced upon me that my health is dramatically deteriorating, but that is very little to do with my main illnesses, ME and COPD, but with widespread osteo arthritis.
Illness is not your enemy – neither is it your friend. It just is. Likewise, there is no future in raging against a universe (or god, whoever, or whatever, you perceive god to be), that has seen fit to inflict ME (or anything else), upon you. Trust me on this, the universe does not bear you a grudge, and has not foisted ME, or anything else, upon you for any reason at all (nor has that ancient bogeyman, “god”). The universe doesn’t even know about you.
Bad stuff happens – to the deserving and undeserving alike – accept that, stop taking it personally, and you may feel, if not happier, then more at peace with yourself, at least. That, surely, is a worthwhile target…
* * * * * * * * * * * * * * * * * *
From my teens until well into my twenties, I cycled everywhere, regardless of the weather. I had, and still have, though it’s been rolled up into COPD, severe bronchiectasis and asthma, and the treatment for both 50 years ago was primitive compared to today.
When I first set off for school and, later, work of a morning, I’d cough and fight for breath so much I’d frequently vomit (one reason I stopped eating breakfast – I didn’t keep it long enough!). Once I was past that stage, though, things settled down and I was much better, but the first bike trip of the day always started that way. Later, the pattern was repeated every morning on backpacking trips, and in the first hour on Sunday rambles (and, with both, again whenever I hit a steep ascent).
That, of course, was no fun at all, but I knew from experience that by pressing on I could get past the pain and distress. I knew some people (very well), though, who didn’t try to get past it at all, and just didn’t do anything that would provoke such a state of affairs. Their choice, of course, but I think that’s a great pity – I would have missed a huge part of my life if I’d quit at the first hurdle. My point being that unless you try, you won’t know what you can accomplish, but if you don’t try, you won’t accomplish anything. It does, perhaps, require a high degree of bloody-mindedness though.
Let me give you a couple of examples, to illustrate what I’m trying to say here. One particular person, suffering from minor, self-inflicted, injuries caused by over-exercising, gave up completely, became a massive hypochondriac and professional invalid, and spent many thousands of pounds of her parents’ money seeking remedies for illnesses she didn’t actually have, instead of just getting on with her life as best she could (not a single doctor of the over 400 she had seen, at vast expense, could find a single thing wrong with her). On the other side of the coin, I know a young woman, suffering from neurofibromatosis, a terribly painful and often fatal condition, requiring an implanted morphine pump to manage her pain, who gets more out of life than anybody I know. And that includes me.