this is especially important in a global pandemic that is decidedly NOT OVER.
i want to be clear, i am not saying we shouldn't listen to science, what i am saying is that doctors are political, biased, fallible human beings like the rest of us.
this update is born from the deep grief i am feeling this week about the ways that the medical industrial complex is and has been failing all of us, but especially black women and disabled people.
as always, look at the most marginalized among us when you wonder if someone or something is trust-worthy 👀
a chronically ill person chose to stop living this week.
Erin M Gilmer was a reputed health policy attorney and patient advocate who traveled across the country to fight for those who struggled with health and economic issues.
at the end of this email i will speak more about why i am personally devastated by this loss, but first i want to hold space for an advocate, a fighter, and a human who suffered and is now at peace.
and a technique that's illegal to use on dogs was legalized for use on autistic children.
A federal appeals court overturned Tuesday a Food and Drug Administration (FDA) ban on electric shock devices used at the Judge Rotenberg Center (JRC) in Massachusetts — the only institution in the U.S. to use them. The FDA banned the use of electric stimulation devices (ESDs) in March 2020. But the court ruled the agency did not have the authority to regulate a medical practice, MassLive reported. JRC reportedly told the FDA that the treatments were used once per week. JRC began using the controversial devices in the 1980s, according to Mother Jones. A viral video from 2012 shows a student begging for the center to stop while receiving the treatment. “That hurts. That hurts,” the student can be heard saying. “Stop. Stop for real.” Rico Torres, a former student who attended the school from ages 8 to 18, previously told NBC News that instructors hooked him up to electrodes 24 hours a day for 10 years.
COVID can leave you permanently disabled. get vaccinated.
COVID-19 could be the largest disabling event since polio, according to some disability rights advocates. They’re referring to people who suffer from “long COVID-19,” also known as long-haulers. These are people who experience symptoms of the virus weeks after their diagnosis. The symptoms range from “brain fog” to shortness of breath to depression. Dr. Charles Davidson, who oversees the Northwestern Medicine Comprehensive COVID-19 Center, estimates that about 20% to 30% of COVID-19 patients are impacted by the phenomenon.
i am disabled and furious.
my mother went back to school to become a nurse practitioner when i was nine years old. she had three children under the age of ten and a husband in rehab and she knew she might need to be ready to take care of us on her own.
in college, i began to refer to her as "Mom MD" because she had all the medical training of a doctor plus the common sense and context of a mother. since then, she has been the go-to call for all things "should i be worried?" for me and my friends. so if there was anyone who felt anything close to my frustration during a decade of trying to figure out what was wrong with me, it was mom MD. she had watched my health problems add up from unexplained stomach pains in elementary school, to a shit immune system and debilitating fatigue in high school and college, plus skin irritation, numbness, and intermittent unexplained pain and bruises throughout my twenties. i had been tossed back and forth between primary care physicians with theories that i had MS or lupus and specialists who took vial after vial of blood, ran invasives tests, and told me i was "fine." i called her crying after each of my doctor's appointments. each year i felt less and less fine and more and more hopeless.
in 2014, my mother began working as a travel nurse and took a six-week contract in baton rouge. i was thrilled when she was able to come to my first appointment with a new PCP. in the face of physicians, i had become timid and hesitant to list all my symptoms fearing i'd be told yet again that i was wrong and that there was "nothing wrong" with me. with my mother sitting in the chair next to me, i read the list of my most common symptoms from a note in my phone i had spent weeks writing. when i got to the bullet point related to my skin marbling red and feeling sensitive and prickly, i said "it's actually doing it right now" and rolled up my sleeve. i paused as the doctor continued to type. she asked me if i had seen a dermatologist. as i began to tell her what the dermatologist said, my mother interrupted.
"she just told you she's experiencing symptoms right now. you're not going to look at them?"
the doctor looked at the two of us for the first time since she walked into the room five minutes before that. she glanced at my arm, nodded, and went back to typing. unsurprisingly, nothing she did changed the persistent symptoms i experienced or lessened my despair.
i don't use the word despair lightly. i have come to understand that i have been minimizing my pain for the comfort of others for the majority of my life. if i were only dealing with pain, numbness, and irritation, i would not have reached a point of emotional crisis. there is a specific type of desperation that only those whose pain has been ignored repeatedly, whose reality has been denied consistently, who have bared their weaknesses and been met with a shrug or suggestion that they might be making it up know.
then and now, i recall a short story that haunted me in high school. the yellow wallpaper:
"If a physician of high standing, and one's own husband, assures friends and relatives that there is really nothing the matter with one but temporary nervous depression - a slight hysterical tendency - what is one to do?"
after years of being told i was fine, i found myself doubting my own body and mind.
several years and as many doctors later, i had given up on finding a solution. i was receiving B12 injections to remediate the only problem that showed up on blood tests and had resigned myself to never receiving an answer.
then my body shut everything down. the pain and numbness came in frequent, but unpredictable waves. i went from spending my days in classrooms and my nights hanging out with friends to spending my days tearing up in my office and coming home from work and going to sleep at seven pm daily because of the exhaustion.
the women in my life sprang into action and booked me appointments with new doctors. a male rheumatologist told me i had all the symptoms of fibromyalgia but that he wouldn't diagnose me because he "didn't like that diagnosis." a week later a woman physician told me she believed me and diagnosed me with fibromyalgia. i had been taking an SSRI for my anxiety, depression, and C-PTSD. she switched me to an SNRI which would relieve those ailments while also addressing my nerve pain. within a week i began to get my life back.
our medical system is a for profit industry entirely run by people with educational and, often, class privilege. in western society, we have come to think of healthcare as diagnostically diagnosable problems with surgical or pharmaceutical solutions. this narrow view of caring for the human body rejects ailments that cannot be clearly diagnosed with blood tests or body scans and resolved by pills or procedures. afterall, these illnesses are not billable.
when we add in the fact that doctors are human beings swimming in the polluted fish tank of our culture like the rest of us, inevitably it is the most marginalized of us who experience the most stress (and thus stress-related illness) and the least care and attention.
like all mourning, my grief for my life as a healthy person is cyclical. overall, though, i am grateful for my disabilities. they have forced me to sit my ass down and take responsibility for the care of my body. i am no longer willing to compromise on my need for rest and i refuse to trade my well-being for any amount of money, prestige, or other short-term rewards. my life has improved tremendously since i began respecting and honoring the limits of my body.
still, i do not want any able-bodied people to join the 1 in 4 of us in the u.s. who have a disability.
i am asking you earnestly and for no reason other than because i care about you, to get vaccinated and wear your mask diligently. the long-term effects of COVID have been documented extensively and hundreds of thousands of formerly abled bodied people have joined our ranks. we cannot prove it, but both my mother and i believe that our chronic fatigue stems from the mononucleosis virus we each fought as teens. since surviving COVID in March of 2020, i have to relearn my body's limits all over again. my already lowered capacity has halved again.
this is not just about getting sick for two weeks; it is about protecting yourself from a preventable, but life-altering virus.
additionally, i hope that you will follow disability advocates on social media and listen to our perspectives. no one can teach you more about how our healthcare system works than we can and you could become one of us any day.
as always, i hope this was useful.
if it was and you've got five bucks a month to spare, click here.
katie wills evans