Epic Medical Failure

I got together with my wife in early 2002. In mid- to later 2002, she started suffering from digestive problems. She got treated, got a little better, got worse, other things were diagnosed, she got treated, she got a little better, she got worse.

It’s been ten years now. I’m sure in the meantime, some of the stuff doctors told up turned out to be a diagnosis, and the treatment was alright. But nothing has made my wife any better.

Today, after the umpteenth blood test was performed on her, after she had repeated her huge list of symptoms to the hundredth doctor, one doctor mentioned in passing that she had Gilbert’s Syndrome – a supposedly harmless genetic condition. This isn’t the first blood test where it showed up, either, but nobody felt it was necessary to mention the condition to my wife.

Yet just about every symptom my wife has ever mentioned to anyone shows up on the list of symptoms for this condition.

Words fail me, for how FUCKING stupid this is. Ten years of suffering, not just from the symptoms of the condition, but far more from not knowing, and it’s just because doctors are a bunch of idiots? Really? Nobody put the list of symptoms together with the abnormal blood test results? REALLY?

Well, no, you’ve got to excuse doctors! Because, after all, their guidelines tell them that Gilbert’s syndrome is harmless.

Which in a sense it is. But if a patient comes to you, tells you of their suffering, and lists everything the blood test confirms, you’d THINK that they could FUCKING TELL YOU.

  • Anonymous

    I have to admit that I’m not familiar with Gilbert’s Syndrome (Morbus Meulengracht), therefore excuse me if I ask that bluntly, does that diagnosis change anything for your wife?

    • http://www.unwesen.de/ unwesen

      Yes. That’s the short answer. It’s not that simple by far, though.

      In terms of what she can do to improve how she feels, there are things she can change about how she eats to feel better. There may also be some medication to help, though it’s unlikely that anyone would want to take it long-term. Neither will make her well, though.

      The real breakthrough is more psychological than physical, though. If you’re being told by various doctors for the better part of a decade that you’re just imagining feeling unwell, then having a clear-cut diagnosis makes a world of difference – both to how you feel about how you feel, and how you can talk to other people about it. As an example, you can now tell doctors more easily to shove it where the sun don’t shine if they want to prescribe antidepressants yet again.

      So while there is no cure, and therefore no switch to flip to make everything alright as it were, it still makes a world of difference.

      • Anonymous

        Indeed, from a psylocgial perspective that is a major step and I’m glad that some pressure had been taken away from your wife.

        My best wishes to your wife.

  • Nonexistent

    Hi from afar!
    Honestly, what about the symptoms is harmless? I am just recovering from a flu for weeks now. Even only feeling dizzy and tired sucks. And talking about doctors: ‘…your body temperature is normal, you are not contagious anymore…’

    Hopefully knowing what might be the reason for the bad condition will help!