Medical Impostor Syndrome

Maybe I should start concealing my hair loss with a jaunty hat!

When I was a child I wanted to be sick, because when I was sick I got to stay home from school. Sometimes I was effortlessly sick and got to stay in the oddly quiet house with its peculiar mid-day creaks and sounds and winter light through the windows and extremely lame daytime TV. But at least once I sat near the heat register before school, then asked my Mom to feel my forehead, and with grave worry she said I should stay home. SCORE! But I suffered a vague sense of being ill at ease – my “dis-ease” not physical, but guilt. I hadn’t earned my reprieve from school by being really sick.

One time I got stung by a bee at recess. I don’t think my grade school had a real nurse back then, so when students got owies we went to “the office” where a grumpy secretary would give us a band-aid. I was in a lot of pain, it hurt like hell, and I cried and cried, not just from the pain but from the terror of the pain. “It doesn’t hurt that much!” said the secretary. But it did. 

A few years later, in Junior High, I was beset by horrendous menstrual cramps. I also developed painful abdominal cramps and diarrhea even when I wasn’t menstruating. I drank barium and underwent medical scans but no specific cause was found, so I was diagnosed with the vague “irritable bowel syndrome,” with no treatment and no sympathy (in contrast to my brother, who had already been through several surgeries for what was later diagnosed as Crohn’s). Doubled over in pain at school, I would go to the office where the grumpy nurse would roll her eyes. “You just have to live with it!” she would snap, as I begged to go home. “Period pain” plagued the rest of my life; I would spend 3 days a month in bed, in agony, until at age 50 I got a hysterectomy and sweet, permanent relief. I was finally permitted a hysterectomy because doctors finally discovered an orange-sized fibroid in my cervix; decades of mere pain weren’t enough to merit any treatment.

Now I have late-onset Crohn’s disease, presumably triggered by my extended bout with COVID this Spring. (Many autoimmune disorders are linked with COVID; I call it COVID-Reactive Autoimmune Pathology, or CRAP.) I got myself referred to the GI department not because of pain, but because months of bad poops had me concerned. One colonoscopy later and bam, I have an incurable progressive RECOGNIZED autoimmune disease that even qualifies as a disability. I’m prescribed a $150,000-a-year designer treatment which my insurance actually covers, and everyone feels sorry for me. I soak up pity like a thirsty sponge.

Just as I’ve seen no correlation between quality of artwork and recognition/money, there seems to be no correlation between pain and external compassion. Some of the worst pain in my life, no one gave a shit about. But Crohn’s? Everyone validates it, and assumes I’m in more physical pain than I am. Yes I am in pain sometimes, if I stray from my ridiculously narrow diet of fresh juice and “safe foods” (Rice Chex, rice cakes, white rice, peeled potatoes, lactose-free dairy, eggs, and fish). But mostly I’m fine. Friends express sympathy and support, but do I deserve it? Sometimes sharing my diagnosis feels like putting my head near the heat register of my childhood home.

On the other hand, I can’t eat real food any more, and when things go wrong they go very, very, crap-in-my-pants wrong. I’m losing my hair and have some dreadful co-morbid skin conditions. And I have these really cool pictures of the inside of my colon (TRIGGER WARNING!):











Author: Nina Paley

Animator. Director. Artist. Scapegoat.

12 thoughts on “Medical Impostor Syndrome”

  1. nina as an admirer f yr genius i really wish u wd try alt med. i myself am an ayurved n treat myself accordingly. am 3rd gen diabetic too. ayur treats u differently, no disease hs a name. unless u PLAN to die of crohns, pleeese pleese go to th nearest ayur centre.

  2. Thank you of sharing your life. I relate to the human needs to stay home, receive some attention, wonder if said attention is merited.

  3. Thanks for your commentary. It feels like an extraordinary privilege to meet you via the ephemerality of the internet. Your Goddess animation is my favorite by far, such a thought provoking, beautiful and imaginative art work, I’ve watched it again and again. Thank you for making and sharing it, I so appreciate it. Your thinking and creativity is so far ahead of your time, unique, beyond run of the mill art, so maybe it’s puzzling to a lot of people. Guess Van Gogh had the same problem as you, with a genius and artistic passion that was outside of the ordinary comprehension of his day.

  4. Man, your cecum looks really angry.
    When I was bald, my go to was a buff configured as a do-rag and a ball cap over that. If I wore a flat topped military patrol cap, then I thought I looked like a French Foreign Legionnaire.
    The unsympathetic adult telling a crying child “it’s not that bad” got to me. How hard would it be to say “there there” to try and comfort the child a little?

  5. Hi Nina,
    Diagnosed gluten intolerant 1990 by exclusion diet. Been lactose intolerant since weaning. Yet I thrive because I do not stray diet wise. Even in small amounts it steals my energy. I live to run so to have the energy I must eat clean.

    Look up gluten free sourdough recipes. Great tasting bread it is BAD to put xantham gum in. Tomorrow I will put a GF sourdough oatbread on to sour. Possibly along with my delicious sourdough pancakes the small risen ones. Yum, yum.

    There are delicious things out there. See particularly if you can tolerate buckwheat flour (no wheat relative, seeds of a rhubarb relative). Fabulous in pancakes and bread.

    BTW the Gender Wars playing cards are one of my most precious possessions.

  6. Sometimes that’s a women thing, where we tell ourselves “it’s not that bad” and only admit how bad it was when the worst is way behind us.

    I did that with abuse, loss of my sister, and onset of my own nasty second autoimmune (now that I’m in remission I can admit how painful and scary it was, but hey, other people had it worse!).

    That’s not being an imposter, that’s being a good soldier, a proper martyr.

    And everybody did those things as a kid. I had psychosomatic earaches that got me released early, so I could avoid the bullies after school, until my mom figured it out and stopped the bullying. It hurt every bit as much as a “real” earache.

  7. Peter, celiac disease and Crohn’s are not the same illness. kumkum jain, Ayurvedic is not medicine of any sort, and to recommend to anyone is the height of irresponsibility.
    Nina, I hope your diet and medication control your Crohn’s so you can continue to tricyle recumbently to your heart’s content.

  8. I am so sorry for your pain. I have a very selfish reason for wishing you good health in that since I found your great artwork ‘Seta Sings the Blues’ on archive .org, I have wanted to see more and more (and more –more damnit, more!) of your creations, and had forgotten that there is a human being doing this work. Pain makes a person tired (I know personally), and if you want to put your feet up and never produce anything for public consumption again. I will wish you the comfort you can find forever. I think you are a great artist, and I suspect you might be a great human being. Sweet dreams now.

  9. It’s astonishing that those symptoms went on so long and were unrecognized. That’s just another insult within an astonishing, incredible artistic life. However, you can do another film with this journey – call it “Nina Paley – The Inside Story,” or if you want to get sticky about it, “Nina Paley – The Inside Scoop.” Let me share the sentiments of Christopher Mason above, but with the correction, not the suspicion, that “you *are* a great human being.” Please remain among us pathetic, undeserving, life forms – occasionally human, occasionally appreciative – for as long as you can.

  10. I’m looking inside your colon, and I didn’t even have to buy you dinner. You really are a feminist!

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