liv: Bookshelf labelled: Caution. Hungry bookworm (bookies)
[personal profile] liv
Recently read: Two very strong pieces on living with chronic health issues and navigating people's assumptions about health and disability:
  • [personal profile] monanotlisa writes I broke my spine in 2006, and nothing has ever been the same for me since.
  • Malfunctioning space stations, by Marissa Lingen within the Disabled people destroy SF series.

    [personal profile] mrissa also wrote, years ago, a post which has really informed my thinking about chronic illness and disability: Hollywood broken leg theory.

    Both pieces are very personal, and also very intersectional, pointing out that people's general status in society will really affect just how much negativity they get in response to their condition. Someone I don't know, Aubrey Hirsch, explored a similar topic in the comic Medicine's woman problem. Transcript below the cut, though I'm not sure I can quite manage full image descriptions.

    1. It started with unexplained weight loss my freshman year in college.
    2. First just a pound or two, then five or six. My clothes started to fit funny. I was tired all the time.
    3. I made an appointment with campus health.
      <Doctor> Do you think maybe you're just homesick? Are you stressed about midterms? You know, a lot of young women struggle with body image in college.
    4. I felt like the doctor wasn't listening to me.
    5. When I came home from spring break skinny and exhausted, with little purple bruises all over my body
    6. My parents made me an appointment with my primary care provider.
    7. <Doctor> I think I know how to help you
    8. [Close-up of a hand holding out leaflets labelled Anorexia and Bulemia towards a frowning narrator.]
    9. It felt like these doctors were diagnosing me based on my age and gender, and not my actual symptoms. young + female = eating disorder. This pattern repeated itself over and over again. I couldn't get anyone to take my concerns seriously.
    10. <Narrator> My periods are all messed up.
      <White male doctor> It's probably stress.
      <Narrator> I'm exhausted all the time.
      <Black female doctor> Haha! That's college!
      <Narrator> I have these white patches on my skin.
      <Older white male doctor> Put some concealer on them.
      <Narrator> Everything I eat makes me sick.
      <Younger white male doctor> Could be IBS. Are you having your period?
    11. I knew my body, and I knew something was wrong, but I couldn't get anyone to listen to me. Not even after I ended up hospitalized for four days because something was limiting blood flow to my heart.
    12. When I showed up in the ER unable to stand, I was given two pregnancy tests before they tested my heart. <Narrator> I can't make it to the bathroom. <Nurse> I'm sorry, baby. We have to.
    13. I had a couple follow-up tests,
    14. but the doctors didn't find the underlying issue.
    15. In the end, they just stopped looking.
    16. <Doctor> Just one of those things, I guess. <Narrator> I also have these other weird symptoms: weight loss, white spots on my skin, I get sick —
    17. <Doctor> Having a long list of symptoms like that is very common with anxiety. <Narrator> I don't have anxiety.
    18. <Doctor> Are you sure?
    19. I kept hearing the same things over and over again.
      <Black man with glasses> You're fine.
      <White woman with freckles> You're fine.
      <Balding white man> You're fine.
    20. Until I internalized it myself.
      <Narrator [falling head over heels]>I'm fine!
      <Narrator [leg in a bear trap]>I'm fine!
      <Narrator [cut up into pieces]>I'm fine!
    21. I gave up on finding a solution to the sickness, the weight loss, the exhaustion, the occasional fainting spells. That all became my "normal".
    22. Almost as bad as my physical symptoms was the growing feeling that I couldn't trust my own experience. I started to feel like the "complainer" my doctors thought I was.
    23. Five years later, I went to see a sleep therapist after I almost sleep-walked out of a third-story window.
    24. <Narrator> This is not fine.
    25. That doctor, finally, tested my thyroid function.
    26. <White male doctor with thinning hair and glasses> There's a problem here. You have way too much thyroid hormone in your bloodstream. I'm surprised you aren't sicker than you are!
    27. But I was. I had just stopped talking about it. I was sick of being seen as high-maintenance, a complainer, a little girl who just wasn't tough enough to deal with her life. But in addition to being sick of all those things, it turns out I was just plain sick.
    28. <Doctor> You have Grave's disease. Your weight loss, nausea, irregular periods, even your heart event... These are all textbook hyperthyroidism.
    29. I felt relieved. Then scared. Then really, really angry.
    30. I assumed that what happened to me was a fluke, that I had fallen through some crack in the system. But I've since learned that my experience was entirely typical.
    31. It takes an average of five years and five doctors for autoimmune patients (75% of whom are women) to get a proper diagnosis. And more than half of these report being labeled as "chronic complainers".
    32. The system doesn't have a crack in it. For many women, it has a crater.
    33. I had been sick for YEARS. Permanent damage had been done to my bones, my eyes, my heart. <Doctor [offering pills] > These will keep your heart in check until you can have your radiation treatment.
    34. I keep thinking about how this damage wouldn't have been done if doctors had taken me seriously earlier. Instead, they saw me as a young woman who couldn't handle the stress of college.
    35. After my radiation therapy, I gained weight, I slept soundly.
    36. I could eat anything I wanted without getting sick, I had energy.
    37. I felt like a new person. And in some ways I am a new person. <Narrator> Can you help me with this?. I'm a lot better at telling people what I need now.
    38. And when I have something to say, I make sure people listen.


    Currently reading: Dzur by Steven Brust. This is the nth in the rather extended Dragaera series, about what happens next when a human ends up in Elfland. In this case, the human's son and series narrator, Vlad Taltos, is living as an assassin and small-time crime boss among people much more powerful than him and whose morality he doesn't understand. I like Taltos' discursive, witty style, and I like the way that each book is fairly light and self-contained, but the series as a whole has very deep complex connections. That said, I can only take so much at a time, so I've been reading through the series very slowly with lots of breaks for other stuff.

    I'm about a third of the way through Dzur and so far it's not really grabbing me. It seems very middlish, and it's still meandering through set-up. Many of the earlier books started in medias res with lots of action, whereas Vlad's quips are witty and his descriptions of food are delightful, but not quite enough to fill a hundred pages.

    Up next: Not sure. I think maybe A long way to a small angry planet by Becky Chambers, because lots of people have enthused about it in a way that makes it seem appealing to me, even though a few people I know really hated it.
  • (no subject)

    Date: 2017-08-03 12:23 am (UTC)
    rachelmanija: (Default)
    From: [personal profile] rachelmanija
    Also, almost everyone with psychosomatic symptoms either already knows they're psychosomatic, or realizes they are once it's been assessed and explained by a qualified person. The patients wrongly told that it's in their head were never even properly assessed (because if they had been, it would have been clear that the issue was not psychological). They're resistant because they already know that their problem is physical and therapy won't help.

    Of all the doctors who said it was in my head, none were qualified to make that call, and none did an actual assessment for that. A few asked one or two of the multiple questions you should ask, but then ignored or refused to believe my answers because they didn't point toward psychological causes.

    Soundbite

    Miscellaneous. Eclectic. Random. Perhaps markedly literate, or at least suffering from the compulsion to read any text that presents itself, including cereal boxes.

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