Surviving Karen Medicine

How do you navigate a healthcare system that wasn’t designed for you?

This is Home/Girl/Health, a column by Destiny O. Birdsong on her experiences as a Black woman surviving healthcare, homemaking, and relationships.

It was a blisteringly cold day in March 2015 when I, exhausted and bundled in mismatched flannel, trudged into the IBD clinic’s waiting room. The most pronounced symptom of my newly diagnosed autoimmune disease was exhaustion, and even though I’d been prescribed an emergency steroid, I was still feeling threadbare and wrung out like an old washcloth.

I was also terrified. I’d heard of Crohn’s disease before, and everything I knew about it seemed terrible: intense pain, countless surgeries, extended hospital stays. I lived 550 miles away from my closest potential caretaker, and I had no idea whether this disease would do to me what it had done to many other people.

My first appointment was a relay of visits to small rooms. First, I met with a psychiatrist, who was kind if not a little condescending, calling me Dr. Birdsong in what I can only suspect was an ill-calculated move to make me feel important. Next, I met with a resident, who looked at my hands and asked if I’d ever had psoriasis. I’d been sick for so many months I was dehydrated, and my skin, leathery beneath a sheen of ash, showed it. And finally, before seeing the doctor with whom I was supposed to co-plan my care, I had one more hurdle to clear: meeting with a dietician to discuss my new eating plan.

Carlotta, a white woman with stern, schoolmarm features, walked in wearing a T-shirt for a 5K and a string of Mardi Gras beads that made me wistful for home. Somewhere in Louisiana, I mused, people are happy. The thought made me hopeful. What followed was one of the most upsetting exchanges of my life.

Carlotta had overheard the psychiatrist call me into his office, so her first question was, “Are you really a doctor?” When I explained I had a PhD, she frowned, typing furiously into the computer and looking as if I’d told a bad joke. Immediately, she began describing the depth of her own training. “Almost as much as they get in medical school,” she insisted. Her previous annoyance morphed into anger when we began discussing the plan. If possible, I wanted to honor a diet I’d developed during a religious fast, so when she suggested sports drinks and meal-supplement shakes, my heart sank.

“Are there alternatives I can drink instead?” I asked. “I try to stay away from artificial ingredients. I’m also very intolerant of soy.”

“Listen,” she huffed. “Do you want to end up in the hospital, hooked up to an IV with a doctor cutting out your insides? If not, then you need to listen and follow this plan.”

I don’t remember much else from that session, or even how I got through the meeting with Dr. O, another white woman who, with the resident looking on, cheerfully explained my new medication. I vaguely remember the pharmacist who demonstrated how I would weekly inject it into my thigh. I barely remember making it back home on the icy streets, but I do remember the phone call with my mother the day after.

*

When I told my mother about my appointment, I burst into tears. I didn’t want to be as sick as everyone was telling me I was, but I also didn’t want to be at the mercy of people who refused to listen, who weaponized my prognosis when they were intimidated by my education or resentful of the decisions I still wanted to make about my body.

Crying was, of course, a reasonable reaction, but I’d never in my adult life cried in front of my mother, partially because my mom is a badass. She slept outside overnight so she could enroll me in the best elementary school in the city. Every year, she’d go into the woods to cut down our Christmas tree because she hated fake ones. One of my most frightening memories of her is when I was four, and I had a terrible time learning to tie my shoes. One morning, in a fit of frustration, I yelled, “I just can’t do it!” My mom grabbed me by the collar and yanked me toward her, so close I could smell the toothpaste on her breath.

“Don’t you ever tell me what you can’t do. Never say ‘I can’t.’ Always say, ‘I can!’”

I learned to tie those bad boys by the end of the week, but, interestingly, not the way everyone tried to teach me. There’d be no bunny ears crossing over each other. My method is tie, create a loop, slip the lace under the loop, and tighten. On the day my mom and I broke protocol and cried together over the phone, she reminded me of the importance of keeping my faith. And I would, but I would also need that four-year-old’s audacity to do a thing the way that made the most sense to me. And succeed.

But first, I’d need to learn to read examination rooms and the slights that happened in them. Spending extended time in a doctor’s office was new to me at that first appointment, but what happened on subsequent days wasn’t. Soon, word got around the clinic that I was combative. Nurses eyed me with suspicion and steered clear when they could. One day, a receptionist told me I should go out and get some sunshine. It might have been a playful response to my clear discomfort, but I have albinism; the remark was an act of emotional violence intended to remind me of my place and what I was.

But first, I’d need to learn to read examination rooms and the slights that happened in them. 

I know when the “angry Black woman” trope has been pinned to me like a name tag for everyone to read. I also know enough stories about medical racism to know the results of doing this can be deadly.

More than a century and a half after James Marion Sims’s horrific surgeries without anesthetics on enslaved Black women, studies show that white medical trainees still presume Black patients have a higher tolerance for pain than white ones. Black mothers and their newborns are more likely to die in childbirth than their white counterparts, sometimes at the hands of doctors who ignore clear signs of the mothers’ medical distress. And Black women like me, who are knowledgeable about their bodies and strive to be proactive in their healthcare, are demonized by the very individuals charged with nursing us back to health.

When Dr. Susan Moore, an internist who was living with sarcoidosis and had been hospitalized for Covid-19 this past November, questioned a physician about why he refused to prescribe additional doses of Remdesivir, an antiviral medicine she’d been approved for in previous days, he replied, “You should just go home right now.” He didn’t feel comfortable prescribing her “more narcotics.” After more bouts with nurses and other hospital staff, marginally adequate treatment followed, but Dr. Moore would still die from the virus a few weeks later.

To have one’s curiosity and pleas for agency pathologized is a familiar feeling, but it is also a deadly game that white healthcare professionals play with Black lives. It is, in fact, its own game of tag: Someone gets offended enough to make you “it,” and suddenly everyone is running for the hills. Or they’re taunting you from a few feet away, withholding care because they know they can get away with it. You’re too slow to catch them. Maybe because you’re sick. And you might be lucky enough not to die from this, but you will absolutely get sicker.

*

In the summer of 2017, just before leaving home for a six-week string of writing residencies, I noticed a small cluster of blisters in my right palm. Over the next several months, my skin would erupt. My hands would peel to the point of bleeding. My finger- and toenails would separate from their nail beds. I woke up one day and a fist-sized patch of my hair was gone. So much would fall out in the coming days that I shaved my head. My feet looked like I’d been walking on hot coals, and I often hobbled because they were painful to stand on. It was an ironic twist to the nightmare I feared living after diagnosis. I wasn’t suffering internally. All the suffering was happening on my skin.

And the sicker I got, the more dependent I became on white women healthcare professionals who promised they could fix things. In exchange, I became a fascinating case as long as I stayed in my place. Dr. O seemed particularly confident she could help with a one-two punch: prescribing a new, monthly biologic infusion known to treat both bowel diseases and psoriasis. She reasoned that, since people with one autoimmune disease often have several, throwing a medication with several approved uses (and side effects) at the problem should do the trick. Unfortunately, it didn’t.

“I think maybe this has something to do with my past medicines,” I offered, remembering an important detail from the summer: For more than a year, I’d been on both a biologic and a supplemental medicine designed to force my body not to reject it. And it worked, but you’re only supposed to take it for a year at a time. Two weeks after I’d discontinued it, my blisters appeared. I mentioned the coincidence to Dr. O and suggested that perhaps one medication had been suppressing the symptoms of the other.

“I don’t think so,” she bristled, though her smile never wavered. “I’ve been prescribing this for years, and I’ve never had a patient react like this.”

I was doubtful, but she continued. “You probably have psoriasis. But the new biologic you’re taking will take care of that. Give it ninety days.”

Can you imagine waiting out the symptoms I described for ninety days? But I had no choice. I waited. And things got worse. I came back to the office, and this time I was angry. But next to each examination room’s computer is a keypad with a series of buttons, and one of them is for security. I needed to be firm, but I couldn’t risk further trouble. I voiced my frustrations. Dr. O wheeled her chair away from her screen to sit in front of me, close enough that she could reach over to pat my itchy hand.

“I think you just need to come to terms with the fact that you have another autoimmune disease and get over it.”

I seethed, but I kept my voice low.

“If it’s true, like you said before, that you’re not a dermatologist, then how the hell would you know that?”

She couldn’t answer.

I left. I also stopped showing up for the infusions.

*

The self-preservation that kept me from cursing out Dr. O that day has kept me sheltering in place for ten months now, and, like then, my diligence is due in large part to my fear.

I’ve read about the death of Shalondra Rollins, a thirty-eight-year-old Black Mississippi woman who was misdiagnosed with the flu by a doctor who, at the time, was sitting on the city’s pandemic task force. I also know about Rana Zoe Mungin, an Afro-Latinx writer whose Covid-19 symptoms were initially dismissed as a panic attack. All three of us share so many subjectivities: Like me, they were Black working-class women. Shalondra was from the South and had preexisting health conditions. Rana Zoe was an early-career writer.

And like me, these were tenacious women who returned for second (and third) opinions after doctors and EMTs failed them. But they still died. And this is why I worry—about my now in this pandemic, which is affecting Black and brown communities at staggering rates compared to white ones, and about my later, when I am pregnant and older than traditional expecting mothers. I worry about surviving childbirth and about the health of my children. But as much as I worry, I’ve convinced myself that I can make it, because while it’s true that the odds are against me, the odds aren’t all there is.

All three of us share so many subjectivities: Like me, they were Black working-class women. 

Yes, I’m a Black woman with a chronic illness in a healthcare system that hasn’t always taken care of me and mine, even when we’re healthy. And it’s true that no matter how many degrees I have, how many notes I’ve taken about my symptoms, or how willing I’ve been to do what my doctors told me to even when I’ve had doubts, I’m not safe. But I am determined. This isn’t four-year-old me struggling to tie a shoe. I’ve long since grown out of telling people what I can’t do.

*

When I finally got in to see an actual dermatologist, she introduced herself by telling me my reputation preceded me. “Dr. O messaged me about what happened during your last visit and how frustrated you are. I understand that, but it’s important to remember we’re here to help.” Moments later, I heard her outside, joking with one of her residents about my case.

“What a conundrum. Too bad you won’t be around long enough to help me figure this one out. Lucky you!” she laughed. I left the clinic wondering how many other people had heard her talk about my body like it was a Rubik’s Cube. That night, I wrote her a letter asking, among other things, for an apology, which I received, along with a slew of prescriptions for useless medications, which lasted another six months.

But the dermatologist would get to the bottom of things. Eventually. My primary care provider—a bright-eyed resident who was perhaps not yet biased against my subjectivity or threatened by my questions—sent a letter asking the dermatologist to perform a skin biopsy, and the results were clear: I had, of all things, eczema. Of course, this was eczema on steroids, or rather, biologics, which amped it up to wreak havoc on my body. I had so many new questions, but I was so happy to finally have one answer, I didn’t bother asking them.

*

I’d like to think my healing was the sole result of my tenacity, but it wasn’t. It was a combination move, just like learning to tie my shoes. I found a loophole in white privilege, and I threaded my way through it by convincing another white woman to plead my case. And let me be clear: I’m the last person to hold up a white savior as the answer to any of my problems. But if I am to be honest about my vulnerability as a Black woman patient, I have to understand the absurd necessity of this strategy, one in which I had to present myself tearfully to a sympathetic ear in order to get a procedure that took less than ten minutes.

But this, I would argue, is the crux of the Black woman experience: Once you decide on survival, the tools you come to use can be unorthodox. In some instances, they are the master’s tools, finessed and repurposed. In others, like the case of my primary care provider, the master herself becomes the tool. In a perfect world, I wouldn’t sound like a user, but my healthcare hasn’t been a fair fight since Dr. Sims opened a Black woman’s body with a speculum. I was never given a choice to select the weapons. So I don’t care what—or who—it takes to keep me well.

And I have been fortunate enough to be well. Chemotherapeutic medication drastically improved my skin, and it is now healthier than ever before. So am I—arguably healthier than I was before my autoimmune diagnosis, though I never returned to biologics. Nearly all of my Crohn’s symptoms are controlled by what I don’t eat, which also happens to keep my skin clear. I know this is not the case for everyone with my diseases. It was a gamble, but I held on to my agency and trusted my instincts, and I haven’t been sick a day since.

But if 2020 has shown us anything, it’s that good healthcare professionals ensure our survival. At least the conscientious and compassionate ones do. But we need more healthcare workers of color—especially more Black doctors—who are more likely to empathize with Black patients than misperceive them as threats. It also wouldn’t hurt if more of those Black doctors were women.

During my last follow-up with Dr. O, a young Black resident came to the room first to discuss my case. Her visit was supposed to be brief, but I found myself telling her everything that had happened to me since 2015. We chatted for so long that she was still there when Dr. O breezed in, marveling at my progress and my lack of symptoms. Then, because the resident was sitting at the computer, Dr. O took a seat next to mine.

“I have a patient now who is having your exact skin problems. He’s also on a biologic, and I’ve been walking his dermatologist through his care.” She proudly patted my shoulder. “It’s such a shame what you went through, but at least your story is helping someone else!”

Dr. O went on about the patient’s other complicating factors, but I tuned her out and looked over at the resident. The whole time we’d chatted alone in the room, I thought to myself, I’m saying too much. She probably thinks I’m exaggerating. But she knew what it was. We were two Black women in a space never designed for us, but there we were, thriving. It feels good to thrive.

It also feels good to be proven right. But it feels far better to be seen. We looked over at each other and smiled.