Yes, you read that right. So here's your warning: if you happen to be squeamish about bodily functions or fluids, I would invite you to see yourselves out because now I am talking about my experiences. Also a trigger warning for a brief discussion of medical trauma.
Shame researcher Brene Brown defines shame as a "intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging.”
Since I did a full Brene Brown reread (which I would highly recommend), I have made a commitment fight back against the shame that I have had associated with so many parts of my life. These are not the moments of mortification that I cringe at. Don't we all have those from our teenage years? But the moments of shame that cover up all of the fear that many people with chronic illnesses and disabilities deal with on a daily basis.
Let's take the title example. It's true. I hate urine tests to the point that my neurologist will argue with labs and other doctors to get them to waive urine tests. I have had to be cathetered with my best friend holding my hand because I was unable to complete the test. I have had a full on meltdown about a urine test in the office the doctor that knows the most about my rare disorder in the country, if not the world. I cringe looking back. Reading these stories, I feel a lot of embarrassment and shame. But I shouldn't have to feel that I am unworthy of love because I struggle to do a certain kind of test.
Another example: I can't walk as fast with my cane as I can when walking without a mobility aid, but some days, it is substantially safer for me to use the mobility aid. After alll, the first sign of an upcoming fainting episode for me is clumsiness. I feel shame over holding up my friends when they want to make it through the zoo or museum faster. This is of course not their fault, it is internalized ableism that I place on myself. I don't feel as if I belong if I literally cannot keep up with the group.
When we are patients, we can sometimes feel very small. Our lives, often literally for me, are in their hands. They can help me to greatly improve my quality of life, but they can also cause me tremendous trauma by gaslighting, interrogating, or straight up assaulting me. I still feel shame over all of those doctors appointments that didn't go as planned (even the one where the neurologist dislocated my knee and mocked me for being on too many psych meds for my age). It still hurts. The shame is a cover, a layer of protection from the fear and vulnerability that only reveals itself with trusted friends and when lying alone in bed at night. In chronic illness circles, we can talk about bodily functions and no-one bats an eye, but the second that you mention those things to a healthy/abled person, their eyes and words shame you into silence.
I have been told that talking about my own life, my own everyday experience is alarming and disturbing and that I should never even mention it at the dinner table. How does that make me feel? Shame.
Abled people, this may sound harsh, but suck it up. You are not the one who has to live through endless phone calls with doctors, passing out on the floor of the kitchen while baking bread, or throwing up because your stomach all of a sudden decided that it didn't like you that day. You just have to hear about it, and if other disabled/chronically ill people are like me, we hide so much of the fear and shame which just makes it worse. This might be the first time that some of you are hearing about this even if you consider yourself a close friend. This is because I am afraid. I am afraid of my symptoms worsening. I am afraid of getting COVID due to people being careless or not getting vaccinated. I am scared of more nights stuck in an emergency room by myself. I'm owning that fear and opening myself up to whatever reactions may come from it because I'm tired of living under a cover of shame.
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