So many of us spend time, and physical and emotional energy – and if in the US, a lot of money – going to the doctor.
It is really important to persuade your doctor to do all the tests needed to make sure that you don’t have a condition that should be treated and can be treated. Even the NICE guidelines suggest that other conditions be eliminated before a diagnosis of ME/CFS can be given. But thanks to the influence of the psychiatrists, (who think that wanting medical tests is a psychiatric symptom), they are not allowed to give you the tests which could point positively to ME/CFS. Also, thanks to the influence of the psychiatrists, they are told that CBT and GET are ‘safe and effective’ treatments for this illness. So your doctor will fall into one of three categories: She/he will respect you enough to believe the account you give of your symptoms, but not know anything about ME/CFS. In that case, she is likely to follow the NICE Guidelines, and you may end up with a referral to a ‘specialist unit’ which will subject you to CBT and GET, more or less coercively. This is clearly a danger to be avoided. (You could do some research to find out what your local specialist unit, if there is one, does offer. Some include mindfulness, very gentle yoga, relaxation sessions. If so, you may not be too harmed by attending.) Your doctor may absolutely know that ME/CFS is a psychiatric condition, in which case you need to change your doctor. Or your doctor may be that rare phenomenon who will trust you to know what your body needs, and know enough about ME/CFS to know that CBT and GET are not the answer, and will try to help you with symptom relief in whatever way he or she may be able to.
You have a right to find a doctor who respects and believes you, and ditch one who doesn’t. That out of the way, consider the doctor’s situation. He or she is confronted with a patient who has multiple, very distressing and disabling symptoms, who doesn’t get better, and for which there is no recognised effective treatment, except the ones that don’t help and do make the patient worse. The patient is desperate for some sort of help, and the doctor has nothing to offer that will help, and this continues for weeks, months and years. Doctors want to be able to get their patients better, and are pretty helpless with ME/CFS. This is the sort of situation which challenges their their patience, their sympathy, and most of all, their effectiveness as doctors. And it doesn’t end. It is hardly surprising that they seek the relief of dumping such a patient into the hands of the psychiatrists.
What is a sensible response to this, from you, as the patient? The truth about this illness is that exertion–physical, cognitive, emotional – makes it worse. The converse is that your best chance for improvement is to respond by giving physical rest in particular, but also cognitive rest, and as little emotional upheaval as possible – the top priority in your plan for living. The original experts were unequivocal that complete rest from the outset gave the best prognosis, and that getting worse was closely correlated with the amount of unavoidable exertion in the patients’ life.
This view was challenged by psychiatrists, also by studies showing that complete bed-rest has its own dangers, also by all the press given to exercise as beneficial in virtually every illness from warts to cancer, also with our cultural addiction to fitness, also by the thread in feminism that regards the 19th century obsession with putting women to bed for everything from warts to cancer as another form of oppression – which probably it was in most cases. Also it seems we worship the individual, especially the woman, who just takes the (here put the name of any over-the-counter cold/flu remedy) and carries on. Or, as Jeremy Clarkson put it, if you get ebola, be sure you get the report in before your liver liquefies. And then there is the paralympics – those heroes who do incredible athletic feats despite incredible disabilities.
From all sides, the concept of going to bed until you get better is simply eliminated from cultural consideration. So how are we supposed to claim our right to the rest we need – lots and lots, for a very long period – in order to have any chance of a pathway towards getting better? Big challenge…but in the meantime – going to the doctor?
Each trip to a doctor is physically exhausting and emotionally stressful – even if the doctor is sympathetic, but much more so if each visit is fraught with misunderstanding and disbelief. And your doctor really doesn’t have anything much to offer that will make up for the setback in your health occasioned by the visit. Deleting these visits, along with deleting as much as possible anything else that requires exertion, may contribute to the time when you can go and report that your self-prescribed rest cure is having results – your symptoms are diminishing, your capabilities gradually expanding.