Counting wooly blue things

“Oh, that’s just normal”.

It’s a phrase you’ll hear a lot, as a disabled person, and even more when you’re expressing concerns about a new symptom.

“My joints hurt all the time”

“I faint every time I stand up”

“I’m exhausted all the time”

“I can never get to sleep on time”

“I feel really sick when I eat”

And the doctor will reply “Oh, sweetie, that’s just normal, everyone gets that!”

It always takes me aback, because it’s such a blatant lie. A few months ago I was explaining to Dr Rh that, despite maintaining the best sleep hygiene that I could (Turning off all my screens an hour before bed, no caffeine more than two hours after waking up in the morning, blackout curtains on my window at night) I was still sleeping about five hours a night, even with diphenhyramine, and those five hours were usually during the day because I couldn’t force myself to sleep at “normal” hours. In tears, I begged him to give me some sort of sleeping pills, or to send me to a sleep specialist, since I wasn’t able to maintain a normal social life, never mind get to appointments or even think about getting a job. And he gave me a big, benevolent smile and said;

“Oh, sweetheart, I’m just the same.”

I blinked slowly.

This senior doctor, who ran a practice with at least 30 employees, who arrived at work at 9am every morning and left at 6pm every night without any notable absences, was trying to convince me that he also couldn’t be woken up by normal alarm clocks, had to sleep in the afternoon a few days a week, regularly hallucinated due to sleep deprivation, slept separately from his partner because he kept such inconsistent hours and didn’t want to risk violently attacking them during a night terror, and was unable to maintain any kind of social or professional life due to the crippling fatigue.

I was, understandably, not convinced. The message I took away was that he didn’t believe that someone could be ill and experiencing something outside of his personal experience, and that he thought that if he just told me to go away, I’d go away and stop having the problem.

And this is an extremely common experience – I’ve got friends who’ve eventually turned out to have severe sleep apnoea who’ve been told “Oh, everyone feels like that”. Friends with a laundry list of allergies or intolerances who’ve been told “Oh, everyone gets that”. Friends with crippling arthritis, and indeed with EDS, who’ve been told “Oh, no, everyone is in pain all the time.” Friends with CFS/ME who’ve been told that literally everyone is exhausted after reading a single page of text.

It’s such an easy lie to puncture. If everyone was, for example, unable to be woken by alarm clocks, there’d be no expectation for people to take an 8-4 job. Everyone would be on flexible hours, because everyone would know that waking up early two days in a row would lead to sleep deprivation and decreased productivity. If everyone really always felt sick after meals, it would be socially normal to eat nothing but small snacks and soups instead of full dinners. If everyone was genuinley in pain all the time, offices would have better break rooms, so that employees could lie down in the middle of the day, and everyone would take that opportunity, because sitting upright all morning would have been agony for everyone.

Conversely – If the person questioning their doctor really is just overly anxious about a normal phenomenon, anxious enough to go through the repeated humiliations of being patronised by their doctor, battling for an appointment, physically traipsing back and forth to the surgery, then maybe the doctor should think about offering some kind of counselling or mental health treatment, or at least just some kind of reassurance that there were ways of managing the condition, since everyone else is (evidently) coping with it so well.

It’s a pointless bit of verbal filler that does nothing but put up a barrier between the patient and the doctor, and make the patient ever less willing to trust that the doctor is competent at all- If they don’t understand that people come to them with medical problems, and that sometimes people take a long time to work out how to best describe their problem (or even that they can talk to a doctor about it) then they probably shouldn’t be working in medicine.

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11 thoughts on “Counting wooly blue things

  1. If any doctor called me ‘sweetie’ even once they’d be getting a formal complaint slapped on their desk!

    You might be interested in how the NHS regards MUS Percy. It’s long intrigued me, as it seems a catch-all for all sorts of things from IBS to CFS/ME & pain (which should not be dumped there in the first place).

    Take a look here. http://www.iapt.nhs.uk/ltcmus/. It might just provoke another blog post!

    Love Cathy x

  2. I make it a point that I will never accept a Doctor’s initial comment on something unless I am satisfied. Thing is there are people who will go in after 1 bad nights sleep. They assume everyone is one of those. Then there’s people like you and me who judge the seriousness before making the appointment. And there’s people like Mrs inky who only vaguely mention something so the doc never believes it is serious.

  3. Those sort of facile “everyone/I experience/s that” comments fucking annoy me from both a personal and (ex-) professional viewpoint.

    I’m an erratic sleeper at times but know fine well it is just that; even as a dipper in and out of depression I was very careful in how I spoke to my depressed bairns, as I knew that I knew what my particular experiences of depression were/are but until they told me that I didn’t know what Little Johnny’s were.

    Knowing that you don’t know is a very good starting point for asking questions about someone else’s experiences I found…

    • Exactly.

      I once had an occupational therapist who decided that my problems were *exactly* the same as her daughter’s problems… Despite the only similarities between us being that we both worked as technicians and both had depression. Very different personalities, very different issues, very different… Everything.

      No idea why it’s not official policy amongst medicalbods; “Thou shalt not compare your problems with those of your patients”. Then the doctors that break it helpfully (Eg, nice orthopaedic who cited his own recently-cured sciatica when reassuring me that sciatic pain WAS the most horrible thing in the world, but wasn’t forever, and that he really felt awful for me) would probably continue to break it helpfully, but the ones who break it unhelpfully (No, physio, the genetic illness that’s crippling me is not the same as your having been kicked in the leg at rugby…) could have the full tonne of bricks dropped on them.

      • Methinks that a lot of folk in the biz latch on to a very limited definition of “empathy” and seem to think that these kinds of comments are “empathic”…

        Pro tip: it isn’t and they aren’t.

        And I am in print a couple of times on that very topic (a couple of versions of my “dissertation” from my counselling course in which I eviscerated Carl Rogers’ “core conditions” with extreme prejudice and much malice and a hefty dose of logic and reason made it into the public domain).

  4. Cathy, you mentioned IAPT!

    You know how I react to that…

    As regards to the whole idea of MUS I still have vivid memories of a) a young lady being referred to our CAMHS in-patient unit immobile from the torso down with we were assured by the referring neurology team NO physical causes and so was offered quite extensive psychological and psychiatric intervention until it transpired that she had a sodding huge spinal tumour…b) a guy on an old stylee back ward at the hospital where I trained having a limp dismissed as psychosomatic by a baby doctor which turned out to be a fracture of his tibia…

    Medics don’t always fill me with confidence. And the idea of letting loose some of those half-baked IAPT bods on those who may have an obscure but undiagnosed condition or one which has been missed seems like a recipe for disaster…

    • Ooh oooh! I once got “No no no it’s psychosomatic, you’re having a panic attack, go home you big timewaster!”, swiftly followed by an orthopaedic chasing me full-tilt down a corridor shouting “COME BACK, YOU’VE GOT FIVE BROKEN RIBS!”

      The way that doctors in general feel that they can fall back on “MUS” immediately, when the answer might really be “This is just waaaaay above your pay grade”.

      The trouble with IAPTers is that they only have a hammer, so they think that everything is a nail.

  5. Some excellent comments. I guess IAPT and MUS were two red rags to several bulls!!!

    Count yourselves lucky that I haven’t had to dig into my toolkit of cliches and tell you all to ‘do your mindfulness’ and then ‘move on’. 😉

    C xxx

    • You could start a very stripey stud farm with all these bulls 😀 My shoulder pain got called “Functional” until I handed my old GP a scapula and made her put her other hand in the glenohumeral process (It’s SQUISHY in there).

      Worse than that is the number of departments that treat MUS as “not real” when the whole point is that they really ARE real, that’s the problem…

      Ommmm, let me mindfulness this all away…

    • Just watch it young lady!

      You have spent too long around some of us more gobby, ranty, worky tickety, sweary types and it is clearly starting to rub off: the prim facade is long gone now…

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