Ask Lots Of Questions, Don’t Eat The Bullshit

I’ve commented before that most zebras seem to be somewhere near the middle of this Venn diagram, and that I think I’ve only ever met a couple of zebras who weren’t on it at all, especially if I broaden “scientist” to include all kinds of research-and-stats-based jobs;


(Go ahead, zebras, put yourselves in the diagram. I’ll be amused.)

As much as it could really be that there’s a genetic disorder that strikes only bisexual autistic physicists who cam in thier spare time to fund their research and are writing a novel about the whole experience, I think it’s much more likely that it’s more to do with the bias on who gets diagnosed;

All of the above states predispose the zeb to either asking questions, or to having a healthy disregard for social expectations.

The scientist zeb has a background in assembling data and testing theories, so is more likely to work out that all the Just-So stories add up to one overarching condition, and the medic zeb might even have heard of EDS in the first place.

The autistic zeb is more likely to spot the pattern of symptoms in the first place and to insist on taking them seriously, plus probably already has some knowledge of the inner-workings of the medical system, so will know where to stick the claw to get the treatment or diagnosis that’s needed.

The sex-working zeb has already got a foothold in the door of ignoring social mores and pursuing something which society tells them not to, so is more likely to keep asking the doctor the questions that need asking. And they’ve probably got plenty of people-skills, to make sure that they get answers.

The artist or writer zeb is probably better at explaining their symptoms to a doctor than the average ineloquent sod, and the zeb that works with their hands (including the musicians) is more likely to spot the early signs as their work starts to get sloppy and their wrists start to hurt, prompting them to seek diagnosis earlier than someone who barely picks up a pencil.

Finally, the LGBT zeb has already probably found one community that they weren’t born into (see any number of articles on the LGBT community, which is inherited by finding, vs most communities which are inherited by birth or proximity) so will be quicker to find the disabled community and to integrate into it, therein to find other zebs and put a name to their own condition.

(I’d be remiss at this point if I didn’t also posit that, due to the idea of zebra-senpai and just how friendship groups spread, I’d be surprised if there isn’t a self-selecting bias there based on the kinds of people that I and my firends are friends with anyway.)

So here’s a brief “What to expect if you’re expecting to be diagnosed with Ehlers-Danlos Hypermobility or Joint Hypermobility Syndrome”.

  • You’ll have been to your GP complaining of pain, lots of pain, or will have turned up in A+E with a mysterious dislocation. Either way, (In the case of the A+E scenario, after having reduced the dislocation and sent you home with painkillers) your GP will want to take a lot of bloods to rule out autoimmune conditions (Sarcoidosis, rheumatoid arthritis) and infections. The bloods will have come back “all normal”, so you’ll be sitting in the GP’s office, munching co-codamol by the handful, and they’ll prescribe you an anti-inflammatory (Usually an NSAID), a painkiller to take when the pain gets too much (Usually an opiate, probably either more paracetamol-codeine, codeine itself, or dihydrocodeine), will forward you to rheumatology, and will put you on the list for physio. They’ll send you home.
  • The painkillers may or may not work, and you might have to go back a few times, often over the course of more than a year, to get settled onto a regimen that suits you. Talk to your doctor – Try different combinations of every-day (Prophylactic) and on-demand (PRN) medications. Try different families of anti-inflammatories, try steroid injections, try topical creams. Try opiates as slow-release pills, as patches, as injectables, as syrups, as sub-lingual melts. Try higher doses of weaker opioids, and lower doses of stronger ones.
  • The rheumatologist will ask more questions – This is where you’ll be most likely to do the Beighton Warp and get asked about things on the Villefranche list; How do you sleep, how’s your eyesight, do you get migraines, how are your bowels, do you bruise easily. They might want to do a fairly close examination – I was down to my pants and having the skin over my hips stretched, my legs moved around at odd angles, and my back and shoulders really flexed and put through their paces. Thankfully, most rheumatologists are used to patients in pain, so they’ll do this in a warm room, with a comfortable table, and will be amenable to stopping and taking breaks.
  • At this point, you might get a diagnosis, or you might get sent on to a specialist hypermobility service. The big point of the hypermobility service is to confirm that it is hypermobility syndrome, and to get access to more specialist treatment options if they exist in your area (Specialist physio, for starters) and to suggest referral to services like Stanmore’s hypermobility unit.
  • You might be referred to the appliance or occupational therapy departments who’ll fit you up with splints or braces as-needed, will install grab-rails in your house, and will in incredibly rare cases possibly fund you for a wheelchair. I have never known ANYONE get the NHS to get them a wheelchair though, so if you need one, and can afford it, just buy it. It’ll save you grief in the long-term.
  • You’ll also be getting physio, on-and-off, to deal with the pain and the losses of function. This is where the problems often are. The rheumatologist and the hypermobility specialist will say “Physio, once a month, for the rest of your life, to keep your exercises up-to-date and monitor your progress, and probably spot any minor problems before they become major ones.” The local physio department will say “Six weeks of physio, then, sorry, you can’t just keep coming back, we need to treat people who will get better.” then discharge you.

This brings me to the biggest point about getting a diagnosis and treatment;

  • It’s only the people at the bottom of the pile who will be unpleasant. Your GP will call you a faker and try to convince you that you have a personality disorder, NHS Direct will be convinced that it’s not a dislocated shoulder, your local walk-in service nurse will tell you to go away and be in pain somewhere else – But rheumatology and the specialist hypermobility service will have nothing but sympathy for you. thye’ll listen, they’ll believe you on the worst and weirdest of your symptoms, and they’ll often apologise for the behaviour of their underlings. If you can get past the GP, and have a rheumatologist of your own, you’ll do fine.

This, incidentally, all explains why most zebras who know that they’re ebras tend to be highly-motivated and highly-educated; They’ve got to get themselves diagnosed with a condition that doesn’t present in bloodwork, has symptoms ranging from “My knees hurt” all the way up to “I need to be fed intravenously”, and which in all likelihood their GP has never heard of beyond a brief lecture at the start of first year saying “You’re never going to see a patient with any of these conditions…”.

I firmly believe that the NHS needs to have a complete restructure of how it treats patients with rare conditions.

So, what do we do, as zebras and friends of zebras? Look back up at the title.

Go to appointments with a notebook and a pencil. It makes doctors nervous and commensurately less likely to fob you off with “go away”. Plenty of “Can you just repeat that, so I can write it down?” “Right, so if I phone [service] and say you sent me…” “Why is that an appropriate treatment? Why does [problem] not worry you? WIll it get better on its own? Why not treat the symptom whilst I have it then?” And write down everything.

Provide moral support to friends – If they want you in their appointments, go with them. Doctors are less likely to be patronising and aggressive when there’s a witness, especially if the witness looks concerned; “But [friend] is in pain, and [drug] is helping them. I was really worried about them. Why can’t they keep taking [drug]?” “I can confirm that it really is weeks on-end, I’ve been with them the whole time” and possibly the most cutting and guilt-inducing “Thank you for looking after my friend”.

Arm yourself, and get used to quoting chapter and verse – Memorise the exact details of both seminal and recent papers on EDS, on management of long-term conditions, on drug use and responses to other therapies. Learn what interacts with what, what’s controversial or not supported by enough evidence. Don’t just be a parrot either – You need to understand what you’re citing. if you don’t understand, don’t go out on a limb – You’ll sound more intelligent and confident if you stick to what you do know well, rather than if you try to bluff knowing more about a topic than you do.

Independently check everything that you’re told. X is better for you than Y? Go home and find the study that says so, or says otherwise. Z will go away on its own in a week? Find out from other people with the same problem. Just question everything, and let it be known that you’ll question everything, and eventually doctors will stop trying to fob you off.

But the short version is very definitely just “Ask lots of questions, don’t eat the bullshit.”


5 thoughts on “Ask Lots Of Questions, Don’t Eat The Bullshit

  1. This is another excellent post Percy, but grim as the picture is, I wonder if the reality is not even worse? Eg GPs who think it is ‘good practice’ to deny you the pain relief etc you need because of ‘addiction’ worries? It may be the GP who is the ‘only’ problem in the system, but they have the power to cause an awful lot of heart-ache and havoc.

    I should add, for those who don’t know me, that I don’t enjoy ‘doctor-bashing’ as a hobby, but some conditions seem to elicit some pretty rum responses (ME being another).

    • Oh god, I’d not even got onto that. I really do need to do a more formal and reasoned version of my various “Why addiction is not a problem” posts, since most of them right now are buried at the bottom of long diatribes about my own GP..

  2. I am three of those overlapping ovals.

    And as for the stages of EDS treatment…. I wasn’t given adequate pain relief until well over a year after I’d had my diagnosis because my GP won’t change anything without input from my pain specialist. Seeing the specialist involves waiting a long long time…. it’s the most frustrating system.

    (your blog is my night’s read, apologies for what may be many comments)

    • That’s fine 🙂 thank you for reading it, I’m amazed that anyone does.

      A year for pain relief? Jesus christ. How is it that GPs get so little training that there’s no quality control – You’d think there’d be some kind of consistency across the profession, rather than “Nice ones can constantly bend and break the rules for their patients, bad ones try to send you away with a Hot Milky Drink and Worry Less”

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