The disabled doctors not believed by their colleagues

MeSci

MeSci

Senior Member (Voting Rights)
(Not sure whether I've posted this before)

19 April

People often feel nervous when they visit a doctor with some fearing their symptoms may not be believed. But what if you are the doctor, and your colleagues dismiss your disabilities and mental health difficulties? Miranda Schreiber explores this challenging relationship.

When I was 15, I described what turned out to be the neurological symptoms of mental illness to my doctor. I told him I couldn't do schoolwork, feel the cold, or understand a book. He suggested I go on walks if I was stressed.

This breakdown in communication, in which patient and doctor seem to live in different worlds, is well-documented by disabled people. Many feel they have to translate their experience, because disability and medical structures seem incompatible.

But this experience is familiar to disabled doctors too, and some are seeking solutions...

...It is made all the harder to confront in medicine when disabled clinicians are vastly underrepresented. Disabled people make up about 20% of the population in the UK and US but only 2% of British and American doctors.
 
I feel at some point we need to address head on the issues that result in doctors struggling to understand/believe our experience/symptoms. It may help that some doctors can report on the issue from both sides, but as we have seen before that alone is not enough. This is something I have been pondering a while, so my apologies if my comment does not fit neatly into this thread.

In relation to ME, the issues I see as problematic for doctors (and at times patients too) include:

  • The historic focus on fatigue means doctors fail to understand the reality of people’s experience and misdirects attempts to research/understand the nature of the condition. This also means we lack a common vocabulary between patients and doctors to describe our symptoms.
  • Lack of a defined aetiology and any currently agreed diagnostic biomarker leave some reaching for a psychiatric diagnosis, even though current psychological models have even less supporting evidence than the biomedical explanations. (Why will doctors reject a biomedical diagnosis that is imperfectly understood, but jump at a psychiatric diagnosis that is even less understood (eg MUS).)
  • The diverse range of symptoms, involving multiple biological systems, means our condition does not fit neatly into any of medicine’s current categorisations and consequently is not unambiguously owned by any medical specialism and does not at present make sense to anyone trying to put it into a single category.
  • Variation between individuals makes understanding/diagnosis harder, as it can be as easy to see the differences between patients as the similarities.
  • Variation over time within an individual, generally both patients and doctors are not given any tools to help to understand potential causes/dimensions of variation (eg PEM, orthostatic intolerance, hyper sensitivities, intolerances).
  • Currently we have no clear pathway describing the trajectory of an individual’s ill health over longer time periods: stable, relapsing and remitting, degenerative, etc.
  • Delayed responses, eg as with PEM, make it harder to understand causal relationships.
  • Because PEM relates not just to one episode of exertion but a cumulative level of exertion over a period of time, individuals can budget their activity, that is within limits they choose what they do or don’t do. This rationing can be misunderstood as the patient actively choosing not to do things that they could do if they really wanted.
  • That there is an imbalance in numbers of female/male suffers, but the condition as does not relate seem to relate to obvious sexual differences. Also historically woman receive poorer medical services and predominantly female presentation of a condition is more likely to be poorly/mis understood.
  • The various associated conditions, such as IBS, hypersensitivities, food intolerances, migraines, etc are also poorly understood; their relationship with ME, whether coincidental or a consequence or resulting from an common underlying causal factor, has not been investigated. Unfortunately some at least of these associated conditions have also been seen as psychosomatic.
  • A rational response to this variation and uncertainty is a constant focus on physical symptoms to try to understand what is happening and predict future variation, whereas doctors can misinterpret this as a psychological issue.
  • Those that reach for a psychosomatic explanation by definition consider the patient viewpoint and self description as profoundly unreliable, potentially creating an insurmountable barrier between doctor and patient, this is not helped by the introduction of the term ‘functional’ which for many is a way of the doctor pretending to believe the patient to make face to face interaction easier but still sidelining the patient experience.
  • Severe ME is largely invisible to the public and to medicine, both because medical provision is either hospital or clinic based and attending either is likely to have greater cost implications to the patient than possible/likely benefits and because the more severe and/or long lasting an individual’s ME is the more likely they are to have given up on their doctors.
  • Distrust between doctors and patients is also deepened by the fact that much medical intervention/advice, particularly in relation to exercise, has been harmful, but many doctors are not able to accept/believe that exercise is not always an answer.
Unfortunately it is hard for doctors (and some patients) to admit how little we understand, and consequently accept we can only respond to the presenting symptoms, however little sense they currently seem to make. Collectively as patient groups we need to find ways to help doctors deal with the current lack of knowledge, but also doctors individually must work hard to help individual patients navigate the uncertainty and variation and help them achieve sustainable management of their condition.
 
"If I said the word 'pain' [colleagues] took it as coded language for 'I'm lazy' and 'I can't do my work'.

"They would challenge my reality," she says, something which led her to conceal her symptoms. "I felt like everything I shared was going to be weaponized against me. They would say 'you walked two days ago so why can't you walk today?' Almost like they caught me in a lie.
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"It's completely baffling to me how we can expect patients to respect us when we won't even believe what they're telling us.
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Medicine must be the only profession where they automatically assume their clients are liars.
 
"It's completely baffling to me how we can expect patients to respect us when we won't even believe what they're telling us.
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Mostly because respect is irrelevant, so lack of respect also is. Statutory authority means you don't have to care about that stuff, especially when you have the sole power to write down what happened, whether it actually happened or not. Doctors are completely oblivious to the fact that they wield immense statutory authority, more than anyone else, and that it's almost entirely unaccountable so when they screw up no one catches it. Great power with no responsibility is the worst possible combination.

This fact is not part of the training. It really should be, among many other missing things.
 
Just found this Reddit post:

Thank you all for your input! I particularly appreciated the signposting to other doctors and researchers working in the field, and CPD modules (that aren't propaganda ghostwritten by the DWP)!

I see that even the mention of a psychiatric component has upset some people. I can understand why, of course, but in my professional life, this is about as maverick as I can go without being totally discredited, sadly. We (by which I mean, the growing number of my colleagues who are questioning the received wisdom) can only buck the trend so much.

So, what I mean by this is: if you run into some younger doctors who seem receptive but also include psychological components, don't immediately write them off! They may just be paying lipservice in order not to rock the boat too much.
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It's interesting to know that doctors are afraid to rock the boat when it comes to psychogenic attribution. What can be done about it?

Edit: I didn't know it would automatically embed the Reddit post.
 
MeSci said:
But this experience is familiar to disabled doctors too, and some are seeking solutions...

...It is made all the harder to confront in medicine when disabled clinicians are vastly underrepresented. Disabled people make up about 20% of the population in the UK and US but only 2% of British and American doctors.
Click to expand...

I suspect one factor in this situation is that the people most likely to apply to study medicine must believe beforehand that they are healthy enough to do the training, which is well known to be physically and mentally demanding. Any medical students not up to the job will drop out or be kicked out of the course. So, the doctors who actually qualify and begin work are probably some of the healthiest people there are, otherwise they wouldn't ever have qualified.

Rhetorical question - What percentage of people who have been proven to be healthy by surviving medical training go on to become ill during their careers as a result of sickness or accident? Could it possibly be 2%?
 
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