#DisabilityTooWhite

Being Black Looking Good While Chronically Ill

By Rachel Lovejoy

Quit my job in Chicago, my hometown and moved to Minneapolis, Minnesota. I was a single, African American woman pushing 30 and I came north in 1997 ‘husband-hunting’. Snared my (first) husband in 1998 and he married a migraineur. “Honey, I’ve a headache,” was said on the regular. Poor guy. On Easter Sunday, April 4, 1999 as I headed to our basement, my right side went numb and I fell down the stairs. My right cheek, arm and leg were weak. I was held for a day and released. I miscarried that summer. My headaches never stopped. It exhausted me. My General Practitioner and neurologist sent me to a mental health pill pusher. They ALL wanted me to take ‘em and, ‘buck-up girlie, you’re still fertile.’ Wink.

Yeah, my GP and shrink winked, as if to say, ‘we all know that you’re going to get pregnant in like 6 minutes so, shut up already and take a happy pill.’ Our suburban neighborhood was swimming in mothers on happy pills. Deal me in! Unfortunately the ones I took made me unhappy and weak but I took them long enough to prove that a) I wasn’t suicidal and b) I was really allergic to ‘em.

My 1st child was born in 2000. And immediately after, I lost sensation in my hands and was beyond tired. I slumped and schlepped into parenthood with fingers that didn’t work. My hands didn’t feel heat. I burned my baby’s bottom! I freaked out but my GP and OB said, “You’re just scared of your kid. And you’re overweight. Take some happy pills!” How in the holy-rosary will psychiatric pills help my exhaustion, my weak arms and numb hands?

I was an at-home-mom with a biracial child. Door to door salesmen addressed me as the nanny or housekeeper. Other moms at home assumed I was lost when I went to our local park. I’ll never forget the Chico’s-wearing, Scandi-Minnesotan who slowly, over articulated to me that, “This paaark is.for. reeezeedents.” I lived within walking distance. I was perceived as a social-racial anomaly or other and I felt pretty isolated in our community. I remember packing to leave the maternity ward that first time and an elderly volunteer helped me. She said, “Be sure to use protection, your people are known to get pregnant fast. Ufda!” Really?!

A young Black woman with hair tied in pig tails wearing a blue t-shirt. She is sitting at booth with two of her young biracial daughters, both are wearing tank tops with their hair tied back.

I was weak as f***, until I got pregnant 5 months later, even though I breastfed full time. I felt great pregnant, all the way up to the difficult, 2nd delivery. An anesthesiologist said I was too fat for an epidural. Who says that to a pregnant woman? Oh wait, I’m black. I hemorrhaged. I spent 4.5 hours in pain, blacking out and being harassed by a night nurse who said my behavior was exaggerated. I begged her to tell me how much blood I’d lost. At shift change my new nurse checked my blood count and it was dangerously low. The night nurse blanched. I got two transfusions and the night nurse voluntarily stayed to keep me company as I received them. I got hives, a crushing migraine post-transfusion but my guilt-ridden nurse had left by then. Again, I had to petition for medical care. My hands were more numb than before and then my feet followed suit. Even though my list of symptoms seemed to be mounting, I left the hospital to care for my newborn and 15-month-old.

A Black woman on a hospital bed and she is receiving a blood transfusion. There is a tube with blood connected to a large machine with hanging bags of blood.

My GP thought I was bored. “If you just got a job, you’d feel better.” Riiiiight. No. I had an attack with one-sided weakness again over Memorial weekend, 2002. An on-call resident ordered an MRI and saw something but said, not to worry. When my neurologist returns from safari, I’ll hear more. No joke.

Life got busy with me fighting insurance companies to cover my medical exams. I avoided going in to be seen as long as I could, until I lost sight in my right eye. I was passed around my health system then. No, I wasn’t diabetic. I didn’t have lupus but since I’d taught myself how to read blood work by then, I knew it was something like it. I was shuttled from discipline to discipline with doctors routinely stating, “Well, you look good and seem to be moving fine.” I struggled to be seen by vague, patronizing specialists with toddlers in tow. While in pain. Y’all said I had the eyes of a 70 year old and I was only 33.

After 2 spinal taps, my bow-tied neurologist sat me down and told me about a disease called Multiple Sclerosis. Like we were eating cucumber sandwiches and he had a saucy secret. He was annoyed to be talking to me, well, us. My toddler was touching drawers as we talked and he freaked out and grabbed her. Startled, I put her in my lap. He pushed bags with CDs, VHS tapes from MS drug companies into my hands, and there was a scrawled note with ‘National MS Society’ on it – all of that had to fall to the floor because, BABY! He said, “Your tests show markers of this disease. I’m not diagnosing you with it. (Scoffing sigh,) I only know white patients with this disease. And YOU’RE BLACK!”

Sooooo fired. I’d been that dandy of a doctor’s patient for half a decade and he threw his hands up at the sight of a black woman with a problem that he’d never seen on a Person of Color. Yet, wouldn’t I like to try one of these drugs made for an illness you prolly have, but girl, who do you think you is?

I found another neuro who did his own battery of tests without torturing me (spinal taps are horrendous.) I was officially diagnosed with MS in 2004. From 2004-2007, my doctors would not acknowledge my pain unless I convinced them it wasn’t blood-sugar related. I had rigorous glucose labs done, unnecessarily. Pain was then treated but labeled as ‘unusual or uncommon’ by my neurologist. I tried to return to work part-time in ‘07 but I couldn’t stay healthy. I swore the kids were bringing home plagues. My 2nd husband and I lived in a crumbly, 100 year old Minneapolis home that we used as an ATM, to pay for my MS drugs until we met the annual out-of-pocket. We were losing equity fast. I applied for Social Security Administration disability benefits but was denied. Then I reapplied. My hearing was held in 2011. I received a disability status from the SSA after 3 years of waiting. And by then my heart murmurs, leukemia, endometriosis (and MORE) had been discovered. We needed the money and I needed Medicare.

I became an advocate and activist for persons with disabilities in 2005. I’ve served on several community boards since with the aim to be helpful and to give my disabled person of color, motherly perspective. I’ve served on national initiatives too. These blessed experiences have made me ever so mindful of being the only.freaking.person-of-color at the muther-luvin’ table. Like, always.

A Black woman wearing glasses wearing a multicolored dress holding a white cardboard sign that reads "Silent No More."

Right now? Psshhh, listen. I’m tired. I’ve no filter. I’m done tokenizing myself this way. I’m traumatized by the passive-aggressive, clueless (racist) nature of non-profit organizations pulling in money to address POC’s needs and who aren’t prepared to seek out POC professionals and pay them to work on it. Tack on driving while black and gun-violence here and across the nation. Then, have encounters with assumptive, dismissive pediatric specialists who belittled, minimized one of my daughter’s health complaints for years. And the result is a combative, chronically ill teen that doesn’t trust her doctors.

A Black woman with long braids wearing a blue jacket with a hoodie. She has a drum around her body and is holding two drumsticks.

When I use my handicap parking decal, since I look so good (werk!), I’m watched, evaluated and judged every time I use a handicap-accessible stall. Sometimes there’s a slow-talking, over-annunciating person ready, white-splaining to me why I, a disabled, college educated, licensed driver who’s blackity-black and isn’t in a wheelchair, can’t park there.

Two women of color at an outdoor protest. One is holding a sign that says, "No Peace. Justice Now! BLM" The other woman is holding the leash with a dog

I’m a professional sick person averaging 2 surgeries a year and y’all need to leave me alone, ‘cuz I need to be well for my teens. I’m here, I’m here, I am here! My illnesses exist even if you can’t see them. From 1995 to 2015, I learned that I’m allergic to most SSRIs, neuroleptic AND pain meds. I’ve lost hair. Tongue has swelled several times. The last 2 new drugs I tried put me in cardiac arrest and produced seizures, respectively.

I’ve had to prove that I’m sick for so long. It’s time to just, be… a patient, a mom, a WOMAN.

Me.

About

A Black woman with her left fist in the air in a sign of solidarity and Black power. She is wearing a teal colored t-shirt.

Rachel Lovejoy is a disability advocate and community activist living in the Twin Cities (Minnesota). She likes to laugh in the face of illness. Her struggle to get diagnosed with MS and to keep her insurance inspired her to be an upstart with NGOs and local law makers; Lovejoy’s aim: to initiate positive conversations and inclusive actions on behalf of persons with disabilities, for women, for kids and People of Color. Hell yeah, she served on the PTA, sucka! Admittedly, a chronic tweeter, Lovejoy ignores living life actual to live tweet hashtag trends. It.is.glorious. Born, raised and a practicing Catholic, Lovejoy sings too loudly at her rock-star-social-justice-y church and is permitted to read to the congregation from time to time. It is the most awesome church. Seriously. Her teenage daughters are still talking to her.

A Black woman with curly hair wearing a striped turtleneck. The the left of her are her two teenage biracial daughters, both with curly hair.

9 comments

  1. What an amazing story! Thank you for your advocacy and story. Why am I shocked at how you have been treated by the medical profession?! As a white woman, I have run into a lot of the “it’s all in your head” docs but never treated so badly and with such discrimination as you. With best regards to you and your lovely daughters. Once again, Alice, you have provided a great interview with food for thought. Sincerely, Lorre

  2. I cannot deny my skim-milk, nearly translucent colored privilege, except when I’m flushed from POTS or pink from an autoimmune rash. But I have no doubt that you’ve experienced discrimination at every level of your diagnostic and disability-related care. I’m not telling you anything new by acknowledging we have a sick, dysfunctional system of oppression against people of color, especially those with disabilities.

    Even with white privilege, it took decades to get my multiple medical diagnoses because I also have mental health issues causing disability. I’ve lost count of the psych meds I was recommended that only caused bad reactions. I went from doctor to doctor until finding former NAVY doctors and a professor with experience treating patients with PTSD and other mental health disorders who FINALLY believed the infections, sun reactions, fainting, migraines and weakness were not simply due to my stress disorder. I can only imagine what this must be like for people of color.

    I read your article to my husband, who also has MS. He was livid about your experience and your lousy neurologist. He said he’d like to drag that neurologist down to Tidewater to see the infusion room at his neurologist’s MS Center because there have always been several black patients he has chatted with over the years. He was diagnosed around ’99 and could not believe your neurologist was so ill-informed.

  3. I’m blessed to know Rachel. She is a warrior and a Queen Deluxe. Mix passion and knowledge and determination…you get Rachel Lovejoy.

  4. aw, MAN!
    (((who’s cutting onions?!)))
    Thank you, everyone for reaching out. Once I got my initial diagnosis, I got my life back. And over the years the label, the communities I’m proud to have joined and our collective medical journey which is raw, brutally beautiful and dripping with hope.

    Thank you Alice Wong for providing this platform and keeping it running with your elbow grease. You ARE changing the face of disability. YOU spark a flame of personal innovation, recognition and appreciation. With Disability Visibility Project, folks like me are heard and inspired.
    Much love,
    Rachel

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