“Why Doesn’t My Doctor Know More?”

This is a complaint I see all the time in TS support forums (forae?) Why doesn’t my doctor know more about TS? Or about my tics? Or about medications? The answer: They’re human.

Med school only lasts for four years, followed by three to seven years of residency. During this time an aspiring doctor has to cram their head with every detail they can of human anatomy, cellular biology, congential conditions, neurological conditions, disease, trauma, perinatal health, geriatric health, birth complications, gastrointestinal complications, cardiovascular complications, respiratory complications, genitourinal complications… If I wrote down the full list it would be incredibly stupidly long, and wouldn’t even start to cover the actual information they need to remember about each.

All of this needs to get packed in there in only four years. Depending on where they do their residency they may never run into a single patient with TS. Even if they do, that may not be the chief complaint that brought them into contact with that patient. (An unresponsive trauma patient with TS looks exactly like an unresponsive trauma patient without TS.)

All of this means that unless a doctor specializes in neurological conditions their entire education on the topic of TS may consist of nothing more than a paragraph or two in their book of mental disorders. If they did their residency in an ER, a cardiothoracic surgical center, a dialysis center, or anything other than a neurology center or a psychiatric facility, that’s probably the last they’ll ever see of it until their first TS patient walks in the door.

Unfortunately a doctor who doesn’t know about TS will often come across as if they do, sometimes spouting patently false information. A common case of this is the general practitioner who scoffs when a patient asks if they might have TS, saying, “Well you’re not swearing uncontrollably! Obviously you don’t have Tourette’s!” As terrible as this sounds, it does happen. Here’s why:

During their schooling or training, every medical professional is told to appear confident. It’s drilled into them. It doesn’t matter if they’re a surgeon or a GP, a paramedic or an EMR. “Be confident.” I just finished my EMR re-certification, and I heard it several times during the course. “Be confident.”

The reason why this is drilled into us is that it helps keep patients calm. The last thing a victim of a car crash wants to hear is their EMT saying, “HOLY CRAP! That’s a LOT of blood!” What they need to hear is, “I’m an EMT. I’m going to do everything I can to help you.” Guaranteed the EMT is thinking about the blood, but outwardly they will appear calm, collected, and confident in their skills. It really works, and it can help keep patients from going into shock so it really is important.

Unfortunately the way this plays out in the doctor’s office is a doctor who proceeds with (apparent) confidence about something they may or may not even remember from when they were in school. From their standpoint it’s not a life-threatening condition, they’re not misdiagnosing anyone (remember, do no harm!), and didn’t they see something on Youtube about some guy who swore a lot?

Of course there are better ways to appear confident while still admitting to a patient that you need more information before you can render a diagnosis. But before you judge, ask yourself if you’ve ever done anything similar. Someone’s computer’s running slowly? Must be malware! (Actually it’s low on RAM, and the disk is 98% full.) A friend’s car is running rough? Must be the gas they’re using! (Actually their spark plugs are old and the air filter needs to be cleaned.) Your neighbor’s kid is annoying, and never stops making all those noises? Must be bad parenting! (Actually that’s a kid with TS.) It’s part of the human condition. You run with the information you have and hope for the best.

The good news is that most doctors are genuinely interested in what they do and won’t pull this kind of a stunt. It’s one thing to appear confident. It’s another entirely to refuse new knowledge. Most doctors are receptive if you offer them valid new information, even if it contradicts what they believe they know.

This is why it’s important to be your own advocate. If you know you’re seeing a new doctor about TS, bring material with you that you can give them. It helps if the material comes from a reputable source. The DSM is a good place to start since that’s what defines the diagnostic criteria. A general practitioner is unlikely to have a copy of the DSM in their office, though a psychologist, psychiatrist, or neurologist almost certainly will. Most libraries have the DSM in their collection, so copying out the pertinent sections is relatively straightforward. Even if you know the doctor has a copy of the DSM, bringing them a printout of the chapter on tic disorders can help.

Another good source of information is any of the national Tourette’s Syndrome association sites. The sites for the Tourette Association of America and Tourette Canada are excellent resources. Check the one for the country you live in. In addition to having information you can print and take with you to a doctor’s visit they may also be able to help you find specialists in your area who have experience with TS.

So what do you do about a doctor who’s not interested, or who refuses to read the material you bring? Nothing. Find another doctor. If you’re their first patient with TS and they’re not geeking out on the idea, there’s not much you can do to change their mind. Find a doctor who’s interested and start over.

Keep in mind that medical treatment of any sort, not just that related to TS, is in many ways a conversation between two people – the doctor and the patient. Any time that conversation starts to feel one sided, it’s time to move on.

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2 thoughts on ““Why Doesn’t My Doctor Know More?”

  1. I think your TS is more severe than mine, but the one time I went to a doc was not a good experience.

    I went because I’d developed a new tic (or compulsion – it’s hard to tell where one ends and the other begins!). Anyway, I was constantly touching my teeth together. Not so much grinding them, just needing to feel them touch, and sometimes slide across each other. It was causing me jaw pain, headaches, and probably damaging my teeth.

    So I went to the doc, to ask for a referral to a neurologist.

    First he looked at me as though I’d told him I ate babies for breakfast when I said I had undiagnosed TS. Then he asked if I swore involuntarily. I patiently explained how it worked.

    Then he refused to refer me to a neurologist unless I also let him refer me to a psychiatrist (which is a whole other – totally nuts – story). I grudgingly accepted, after failing to explain to him that TS is not a mental illness, it’s simply a neurological condition. (The shrink messed me up in other ways, and asked the same question about swearing, as well as asking if I’d “tried not ticcing”!!)

    When I finally saw the neurologist, he listened, said something along the lines of “yep, classic TS, your doctor and shrink were idiots”, and gave me a botox shot in my jaw, which actually helped after a week or so!

    Anyway, my point? That I don’t expect doctors to know everything. I do expect them not to patronise me and talk down to me because I have an issue they don’t understand or know anything about. And before they insist that it’s something that requires a psychiatrist, they need to think very carefully about what they are saying!!

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    • Absolutely! Yeah, when I read your posts about visiting the doctor, the pill-psych, and the neurologist, I cringed inside. When I was first diagnosed I wound up going to a whole slew of doctors to try to learn more about TS and what I might be able to expect down the road. I had one that sounded a LOT like the psychiatrist you visited. He basically handed me a fistful of Pez dispensers full of things I had no intention of taking, and got frustrated with me when I said I wasn’t really interested.

      But as for your last point, you’re right. Doctors shouldn’t be patronizing no matter what. Unfortunately I think some of them develop a god complex and take the whole “appear confident” thing way WAY too far. It’s not just for neurological stuff, either. A friend’s kid was bit by a dog, and the doctor treated it like an open wound rather than as an animal bite, and didn’t do anything other than clean, bandage, send home. A week later they clearly have an infection and the doctor basically told them they were just being impatient with the healing process. Eventually they had airlift him to another hospital where he went through all sorts of stuff to avoid having his leg amputated. ALL of that could’ve been avoided if the doctor had got off their $%@! high horse and admitted it was an animal bite and needed to be cultured from the get-go.

      You can’t always expect your doctor to know about every condition, but yeah, if you wind up in the office of a condescending jerk, it’s time to walk and find another doctor.

      Glad you wound up with someone who knew their stuff!

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