Death By Trans: How Medical Neglect Kills Transgender People
Elizabeth died of prostate cancer at age 48.
It was a preventable death and mostly a treatable cancer with a typically high success rate. Elizabeth, however, had her symptoms ignored and her cancer undiagnosed until she was on her death bed. Why? She was a transgender woman living in America’s rustbelt- not in a big city where oftentimes, many doctors specialize in treating LGBTQ patients. Callen Lorde in New York City with four locations in Manhattan and the outlying boroughs, for example, is described as the global leader in LGBTQ health. Other metropolitan cities pocketed throughout the world offer queer specific healthcare access.
But in the large swaths of less populated, more conservative areas between bright, shining cities, transgender people find going to a doctor an emotionally taxing if not anxiety inducing experience. Many have horror stories stemming from contention interactions in emergency rooms to facing down disaffected doctors who sit in the corner of their exam room like a scared rabbit in a room with a lion. Their discomfort is often clear and so is their sense of urgency to make an exit. While in the United States, doctors already schedule patients in increments of 4–9 minutes leaving very little time for a thorough exam or clear picture of a patients medical needs, Transgender people are typically treated without ever being properly diagnosed.
Some Trans people deliberately avoid going to a doctor for personal issues where in their needs might compromise, albeit temporarily, their dignity. Elizabeth had problems urinating and was put on antibiotics although she had bladder or urinary tract infection. At her appointment, she was deeply uncomfortably having to discuss anything to do with such a sensitive issue with her physician. On a later visit as symptoms persisted, and although her doctor knew she was Transgender and prescribed her hormones for maintain proper levels post surgical remedy, having to discuss with him a feeling of discomfort and heaviness in her rectum made her cringe. She did try, and without the doctor crossing the room for as much as an routine exam- not even to listen to her heartbeat or look down her throat, he diagnosed her with a hemorrhoid and gave her cream- but only after grilling her on sexual practices.
She resisted the need to go back to the doctor as her condition deteriorated over the next three years. She suffered, afraid of persecution or judgement or having her symptoms attributed to sexual activity, a problem that is common for Transgender patients with any myriad of issues relating to their anatomy.
By the time Elizabeth got the care she didn’t just need, but deserved, it was too late. Her cancer had spread and she was terminal. Her wife of 12 years, Terry, recalled Elizabeth’s emotional gauntlet.
“She knew something was wrong. She was in pain, and she would go to the doctor, come out five minutes later with a prescription for Advil and just sit in the car and cry. She would say ‘They don’t want to treat me, they don’t want to touch me, for God’s sake they don’t want to help me. They don’t care.’ Liz didn’t want to die, but she got tired of trying. No matter how bad it got we knew her going to the doctor would be as about effective as going to car wash for healthcare.”
“Just, no one wanted to talk about a Trans woman’s prostate.”
At Terry’s urging, Elizabeth made an appointment her own to see a urologist. Because she wasn’t working, she could not afford medical insurance or an out-of-pocket pay. After trying for four months she finally got an appointment at a clinic in a large city 2 hours away from her home. It was one of her last appointments before giving up entirely. “The doctor walked into the room and thought I was Elizabeth. I pointed to her and said ‘No, I’m her wife.’ You’d think he would have known given she was on the bed in the gown. And he went white, put his finger on his lip staring at her chart and said ‘Be right back’ and walked out. A ew minutes later we heard him in the adjacent room where there was only a joint bathroom with a door leading into it from both sides talking to another patient. He skipped right over us for a half an hour and then came back in with a nurse with him. Elizabeth tried to make a joke and said ‘I don’t know why I just can’t get things like a hammertoe or Tennis elbow!’ He didn’t laugh or anything but flipped through her pages and said “You’re transgender, do you still have a-” and he gestured into his lap. She had to go through the whole rigmarole of describing her surgery, how much she’d had, how long ago and basically come out as Trans all over again. Her medical condition, the very reason we were there did not take center stage, her transness did. It was an obstacle, always an obstacle.”
This is the case for millions of transgender patients in need of care. Whether it is a Transgender man with ovarian cysts or fibroids that cause painful, heavy periods or a Transgender woman with an enlarged prostate or cysts in the epididymis or a testicular torsion if they are pre or non-operative, a host of problems involving sex organs or a biology that betrays their appearance making them feel vulnerable to a skittish or bias doctor can ultimately prove to be deadly.
It is quite ordinary for a doctor to feel an impulse to quickly write off a Transgender patients because they are not trained to treat them and, more frequently than you might imagine, feel uncomfortable having to, so they don’t. Health discrimination isn’t always a use of insensitive gestures or deliberate misgendering, quite often it is the passive denial of adequate treatment, passively dismissing very pressing symptoms off as overly simplified common ailments and shuttling a transgender patient out the door. No real meaningful service is exchanged for the bill they issue the patient who is left with no diagnosis, no peace of mind and often feeling like they have nowhere else to go.
Other Transgender women I have known, personally, over my lifetime have died prematurely due to things like colorectal cancer left undiagnosed. There are currently no studies on the consequences of being trans and needing adequate medical care in conservative or rural areas, thus no light has been shed on the number of people we have lost as a result of these experiences.
“I don’t believe she would have died of the cancer,” Terry tells me. “I believe she died because she was a Transgender lady with a condition that wasn’t treated. If she had been a Man who walked in there she would have survived. It wasn’t the cancer that killed her, it was being Transgender while sick.”
“Death by Trans.” Terry said.
In the era of COVID-19, patients in need of care are already apprehensive about seeking it for developing health concerns in fear they might be exposed to the virus at a doctor’s office or hospital. An added deterrent that has impacted the LGBTQ community especially hard. A disproportionate number of those who identify as LGBTQ live below poverty standards, work for minimum wage and live check to check with no ability to save or afford health insurance. In rural and conservative areas of the United States, economic disparities have crippled healthcare access for this community and the rising risk of getting sick as a queer person is a terrifying prospect. This is especially frightening for openly gay men, too, who either have an appearance or demonstrate mannerisms perceived as effeminate. “Being suspected of your sexuality deviating from ‘Normal’ and sitting in front of a religious doctor who loathes you on that basis alone means you’re not going to have a productive visit.” Vincent, a Transgender gay man in Fayetteville, Ohio tells me. “I saw five doctors in one year to get a diagnosis for cervical cancer. It was a terrible experience, psychologically, being a man and having to as a doctor to look at you without your pants on. It triggered my dysphoria every time and I dreaded going. It made me physically ill to go… ad then go to another doctor and then another one after that because the last of did the minimum and sent me home after telling me to use a warm compress on my abdomen.”
Unfortunately, most Transgender people have horror stories involving Doctors that parallel these experiences. And it’s nothing new. We have been dying from medical neglect for decades.
“Ambulance workers jeered at and refused to treat Tyra Hunter, a trans woman seriously injured in a car accident outside Washington, DC who later died. The same kind of hate-fueled medical negligence killed Robert Eads, a trans man with ovarian cancer whom 20 separate doctors wouldn’t treat; one said the diagnosis should make Eads “deal with the fact that he is not a real man.”” — Lambda Legal
It is time for the medical industry to address the disparities between the healthcare cisgender receive and the lack of healthcare provided to transgender patients in both the UK and United States. In order to properly gauge the severity and the impact suffered by the Transgender community regarding their healthcare, it is vital for studies to be conducted, as they have been for other marginalized communities, to emphasis the need for action, but thus far, none have been done, and the Transgender community is dying because of it.