Another (misinformed medical opinion) bites the dust.


Ten years ago, I went to the doctor. One of the things I mentioned, figuring it was just a really annoying manifestation of the movement disorder that’d recently been identified, was “I keep forgetting how to urinate.”

The doctor snapped back at me, in a tone that took me and my mother aback, “Don’t be silly. Urination isn’t voluntary.”

Unsurprisingly, I kept getting urinary tract infections. At one point my doctor actually yelled at me for not being able to give a big enough sample, even though it was bad enough at that point for there to be blood in my urine, among other signs of a nasty infection.

I get things like that a lot. Both developmentally disabled people and people who’ve been in the psych system get things like that a lot. It’s assumed that we don’t know what we are talking about, or are imagining things. So I spent a long time trying to force, cajole, etc., urine to leave my body. The good part was I had less (but, since it was intermittent, not no) trouble with incontinence. The bad part was that this was worse.

But even though I get a lot of discrimination, I also get things like the following a lot:

Nearly ten years (and a zillion UTIs) later, a nurse watched me struggle for half an hour to give a urine sample despite a full bladder and no infections. She asked me if that was common. I replied (with a huge bunch of nervousness) that it had been going on ten years and only getting worse, but that the only time I told a doctor he’d told me it was impossible. The nurse insisted on getting a doctor to refer me to a urologist.

After a bunch of really nasty tests, the urologist told me that he had located the problem. There was a lot of spasticity in my urethra, the place that urine leaves the bladder. So it was hard to get urine through it when a spasm was going on. This was fairly unsurprising because in the course of other testing people had been finding spasticity in a lot of other muscles.

So I did several months worth of a weird electronic training routine to learn how to isolate and relax that muscle. With only partial success. So the next step is trying an implant that will send signals to the muscle in question telling it to relax. It’s only minor surgery, and much as I loathe surgery I look forward to this one every time I sit on the toilet until my feet go numb.

It seems like every single time a doctor dismisses what I have to say, a later doctor will find the real cause of the problem with the right testing or exam. In fact, given my fear of doctors, I seem to have a far better track record this way than usual. They don’t always find the first thing that comes to mind, and sometimes they find something while looking for something else. One time they had to do a long methodical series of tests before finally finding something totally unexpected (a rare form of COPD (caused by, hmm, medical neglect) when their best guess had been aspirated reflux). But they always seem to find something, given enough time. Because, despite what the prejudices of some doctors might say, I never bother a doctor over nothing.

You would think this kind of track record would increase the confidence of the ones who blow me off, but there is always someone ready to believe that people who look like me can’t possibly be right if we say something’s wrong. Because apparently there aren’t enough disabled people who die or become seriously ill because of people either dismissing our observations or just dismissing our worth as human beings.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

6 responses »

  1. There are many people on this planet who are not good listeners and unfortunately this includes some medical doctors. Thank goodness there are also some very dedicated ones who listen quite well. There is nothing quite so satisfying as finally finding someone who can listen and problem solve and be genuinely helpful. Thanks to the observant and caring nurse who followed through and to the new doctor who listened and applied his knowledge. I also say good for you for telling your observations one more time to someone after so many times of getting flack. You have had to put up with the consequences of having this go undiagnosed way too long and I hope the procedure is a remedy that puts an end to this decade old problem. Hugs!

  2. I have always believed that people know their bodies better than doctors do. Yes, a doctor knows a lot about bodies, but that knowledge is of the human body IN GENERAL. When it comes to your own, personal body, you know more about it than anyone else does, including your doctor.

    I am very thankful who have doctors who listen to what I say and never blow me off when I tell them that there’s something wrong.

    A few years ago and before I met those doctors, I had a pain in my stomach that wouldn’t go away and kept getting worse. That continued for months until a doctor would take it seriously enough to do a simple ultrasound. By the time they located the problem and fixed it, I was perhaps a few days away from going into septic shock.

    Although I have no evidence, I can’t help but feel that those doctors would have taken my pain more seriously if I were male and/or an adult. As it was, I was a fourteen-year-old girl, with no outward signs of pain. They had nothing but my word to convince them that I was in the WORST PAIN EVER. When I’m in pain, I don’t cry or scream; I get quiet.

    I am very fortunate to have found, in the years since, doctors who listen to me, and to have a former nurse for a mother who taught me that doctors are not gods; they make mistakes, and they are affected by ignorance, prejudice, and arrogance. Some of them are truly great, but you have to look carefully sometimes to find them.

  3. Have you checked whether this might be related to any medications you take long term?

    I’ve experienced the same problem, in much milder form, as a side effect of taking Elavil for my Crohn’s. I have to stand and focus on the act of urination before the flow starts.

  4. Ahh this is so familiar. My Autism itself is one of those things. “Sound really bothers me.” “Shut up, you are just wanting attention.” Just go down the list. Or the really bad nosebleeds that nearly killed me and i had for years caused by a tumor that a doctor caught with very little time before it went into my brain.

    Such “fun”. This is why I do not believe in hypochondria. Not only do you and I both have disability, weight, and the Autism (I do not personally consider this a disability, thinking differently is not disabling but other things may be. I could be wrong if I am just say so) but we are also women.

    Historically women’s needs have been ignored by doctors, and in so many ways still are. I have been told by doctors everything from “You are being hysterical” on to “It is all in your head.” So far 27 accurate diagnosises later (and some pending) nothing was in my head. I never needed their drugs either. It makes me so angry that people neglect those they see as either things or burdens.

  5. I’m glad this finally got taken seriously.

    It’s assumed that we don’t know what we are talking about, or are imagining things.

    Oh my, yes. I’ve even had the one who took the problem seriously later act like I must have been to blame for its being neglected/dismissed earlier. It’s certainly crazy, in some people’s books, to go for years with an untreated problem at all, no matter the reason. That assumption that other doctors necessarily have better motives than the patient is frustrating.

    Not to mention the biggie you mention, that we can’t possibly know what our own bodies are doing. Bah.

    ekey3cat wrote: As it was, I was a fourteen-year-old girl, with no outward signs of pain. They had nothing but my word to convince them that I was in the WORST PAIN EVER. When I’m in pain, I don’t cry or scream; I get quiet.

    That sounds familiar. I got a lot of symptoms dismissed near that age, but was lucky enough to run into two doctors who took me seriously when I did develop a potentially fatal problem (pituitary tumor, apparently iatrogenic). There has been some research on women having pain taken less seriously and receiving less treatment for it than men do–also being perceived as more likely to become dependent on and abuse pain medication, unsupported by reality. I’d be amazed if kids who aren’t even supposed to have Real Problems (besides having lower credibility in general) didn’t get even worse treatment overall.

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