This past June, we (Julian and Ariel) organized our efforts to bring awareness to the intersections of transition-related healthcare and long-term chronic illness-related healthcare. These topics are considered difficult even independently of one another, and with respect to the cross-over, there is very little public discussion. Julian and Ariel are both influencers who are proud to be trans and proud to be chronically ill, using their platform to share their stories and experiences with others.
June 2019 coincided with the 50th anniversary of the Stonewall Uprising, an infamous and monumental event where the poorest and most marginalized people of the Greenwich Village neighborhood of NYC, trans and gay persons of color, rebelled against an unannounced police raid of the Stonewall Inn. Within weeks of the raid and rebellion, LGBTQ residents of Manhattan organized into activist groups to concentrate efforts on establishing safe harbors for non-straight and non-cis residents without fear of being harassed or even arrested. Today, we recognize not only Christopher Street Liberation Day (June 28th) as the anniversary of this event, but we memorialize and celebrate the entire month of June as LGBTQ+ Pride Month.
Just to clarify: Our gender is not a direct result of our chronic illness, and we are not sick because we are trans. It is true that rates of advanced disease and chronic illness (both physical and mental) are disproportionately higher in the trans populations versus the cisgender majority. At least part of the reason for this is due to a population-wide reluctance to receive care from the general healthcare system leading to a delay in routine healthcare. According to a recent study published in the Annals of Emergency Medicine on trans, gender non-conforming, and intersex folk, non-cis people have experienced or anticipate experiencing poorer care competency, more discrimination and trauma, and more delays and denials in applying emergency care.
The History of Trans Healthcare
There are landmark historic cases of trans persons receiving poorer than standard healthcare. One such case is the death of Tyra Hunter, a trans woman who did not receive emergency care from EMTs or hospital services after she was seriously injured in a car accident in 1995.
This was contradictory to the Emergency Medical Treatment and Labor Act (EMTALA), a 1986 federal act to ensure public access to stabilizing emergency services, including requests for transfers to alternate facilities. Because of federal law, Tyra’s mother was awarded $2.9 mil in damages for wrongful death and healthcare bias. Yet regardless of the federal law, none of the negligent providers were ever disciplined.
21st-century trans advocates hold onto the EMTALA as their rock in the face of Trump administration healthcare exemptions. But although providers cannot refuse services outright, some may hold services ransom in exchange for humiliation.
Discrimination in Medicine
On one occasion when Julian was at his regular ER for GI/feeding tube complications, he had the displeasure of seeing a doctor that was new to his care. The doctor abruptly asked, “What parts do you have?” It should be noted that Julian’s urogenital anatomy is irrelevant to his gastric anatomy, and never mind that the simple answer to that question could be inferred from Julian’s chart and record. The doctor chose instead to lay hands on Julian to “find out” before proceeding with regular services.
While the doctor didn’t outright deny Julian care in this instance, he made it clear that he was not going to provide even basic care until he personally “validated” whether Julian’s gender was “congruent.” This is sexual battery. 28% of respondents in a report by the National LGBT Task Force acknowledge experiencing this kind of misconduct.
Another historic instance of discrimination in medicine is the tragic fate of Robert Eads. Robert was initially denied access to gender affirmation surgery due to age-based discrimination (because he transitioned late in life). When he was later diagnosed with ovarian cancer, twenty individual doctors refused to treat or surgically intervene. One doctor allegedly stated that the diagnosis should make Robert, quote, “deal with the fact that he is not a real man.” He died in 1999.
The World Professional Association for Transgender Health (WPATH), as of the most recent edition in 2017, has established protocols and entitlements to allow trans patients to receive affirming treatment. Worldwide cultural bias against AFAB bodies receiving treatment that impacts their reproductive ability (rooted in misogyny) often impedes this treatment even in the case of life-saving or quality-of-life-improving stakes. Access to competent and safe urogenital care and surgery is still often a stalemate.
Finding the Right Doctor
Ariel is an endometriosis patient. Endo is a manageable, yet incurable gynecological condition that recurs even after hysterectomy, so long-term gynecological maintenance has always been a priority for him. Truth be told, finding a competent and trans-affirming gynecological surgeon was not nearly as difficult as other aspects of Ariel’s chronic care or his transgender care. Yet the process of getting to that surgeon was a different story altogether.
Leading up to surgery, Ariel did a full gynecological work-up, including a pap test, labs, and an ultrasound. And while he did experience poor conduct throughout the process, he didn’t realize until after the pathology came back on his tissue that he had also experienced bad faith. The interpretations of the original lab data indicated clear results. Pathology results and an independent second interpretation of the original tests revealed far more insidious results that may require further future procedures. In the meantime, he is advised to practice good vigilance and be regularly examined and have testing done. Given that trans men and nonbinary AFAB people disproportionately have inadequate paps and screenings performed, it’s hard to trust when a “clear” result comes back. For a chronic illness patient, this is virtually a nightmare.
Trans Patients with Chronic Illness
Chronic illness patients as a whole are used to misinformation, ignorance, and lack of treatment options. For trans patients with chronic illnesses, this is even more complicated. Transgender healthcare was not added to the mainstream curriculum for med schools until 2010. Previous generations of doctors are, for all of their knowledge that they do have, uneducated in this field and often feel that they are unqualified to provide health services to trans patients or unqualified to provide trans-related health services to patients.
The results of a U.S.-based nationwide study printed in the Journal of Oncology indicate that only just over half, 65% to be exact, of oncological professionals alone agreed that being able to identify their patients’ expressed gender was relevant to their care. Only 19% of these professionals expressed confidence in awareness of trans health needs. Fortunately, 70% overall showed interest in receiving more education.
Yet across the healthcare profession, many providers may not intentionally admit trans patients at all. Others may accept and acknowledge their trans patients but then also offer several disclaimers that they will not or cannot provide any trans-related health services. Both of us have experienced variations of these rejections, including awkward or inconsistent mis/gendering, disclaimers and rebuffs related to gender-affirming procedures, outside referrals due to lack of ethical competency, and even the laughably frustrating trans broken arm syndrome, the implication that a plain and observable symptom is actually just the byproduct of gender-affirming treatment and not a unique medical problem. Julian has lost count of how many times his providers have inquired whether his life-long chronic illness was “due to the hormones.”
Unfortunately, this happens in reverse as well. There are many trans-affirming doctors and surgeons who fail to provide whole-body wellness. The results of this may be relatively benign or scarring. The latter was the case of Ariel losing his areolar grafts in gender affirmation surgery due to a reported autoimmune condition.
What We Can Do
It’s easy to put the onus of advocacy on trans people alone. We most certainly have been the loudest voices shouting to be seen and heard.
It’s easy to say that trans patients should become educated about their legal rights as well as enrich themselves with an encyclopedic knowledge of their whole-body health. Both of us, by nature of being professional patients and by nature of willfully becoming advocates have become very well-researched in this regard.
It’s easy to say that trans patients should always use the buddy system when attending appointments or when admitting into the hospital. We have definitely always had our respective “healthcare chaperones” on standby.
It’s easy to refer trans patients out to specialty health centers. But this advice is frustrating even to cis chronic illness patients (especially cis women) who go the extra mile to become empowered and are still downplayed by the general public and dismissed by doctors.
Truthfully, It is up to cis allies, both healthy and chronically ill, both patients and medical professionals, to share the labor of becoming educated. It is also up to cis medical professionals especially to open their hearts to listen to their trans patients and to hear both what is being said and what is deliberately not being said out of fear. Medical professionals should be unafraid to ask questions such as: “Can I confirm how you would like to be addressed so that I may add it to your file?” and “May I ask whether you are being regularly screened/receiving mammograms?” (They may also refer to the University of Iowa Healthcare’s TRANSCARE protocol.)
There are many articles and guidelines for how to be an ally to folks with chronic illnesses as well as how to be an ally to trans folks. There are no real specific resources on how to be an ally to disabled transgender folk, although there are groups, organizations and advocates devoted to representing disabled and chronically ill trans folk.
That means that the most crucial thing for allies to do is to make time to listen to trans folk with illnesses and disabilities. Open your hearts and your minds to our experiences. Amplify our voices when you can if you feel that we are not being heard. You can do this by reposting/retweeting/reblogging disabled trans individuals. You can cite us as sources. You can call us by name in the conversations that you initiate about trans rights in the medical setting.
Another Pride Month may be in the books, but we can continue to make great strides in history every day by making medical discrimination a thing of the past.
About the Authors
Ariel is a lifelong subscriber to chronic illness who has given up trying to find the ‘unsubscribe’ button. He lives with his partner and animals on a modest homestead in the southeast United States. Apart from being a permanent patient, Ariel is a death-positive advocate and frequent blogger on his WordPress blog. Learn more on his website!
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