Disabled,Trans and Proud
Updated: Jul 16, 2019
By Ariel & Julian | @carpe_that_diem @thedisabledhippie | July 15, 2019
We are a dynamic duo. We are an unstoppable force. We are the perfect balance of blazing fire sign energy and water sign’s shades of cool. We’re the best kind of best friends. We’re also both AFAB (assigned female at birth) transgender folk and both long-time Florida-based chronic illness patients.
Now that we’ve established a bit of who we are, it’s important to clarify a little bit of what we are not:
Our gender is not a direct result of our chronic illness, and we are not sick because we are trans. Rates of advanced and chronic illness (physical and mental) as well as mortality rates are disproportionately higher in the trans population versus the cisgender majority. However, this is not due to transness preceding disease or even due to transness being a disease itself.
It’s not that hard to find people who do believe that being trans is a disorder, even though “gender identity disorder” and “transsexualism” has been removed from the DSM and from the World Health Organization’s disease manual (the ICD-11) not once, but twice over. Both manuals have created criteria and appropriate treatment plans for “gender incongruence,” the assessment that chest and/or genital reconstruction may be necessary to appropriately correspond to the individual’s gender identity, and “gender dysphoria,” the poor mental health (including depression and anxiety) that an individual may experience because of their gender incongruence or because of discrimination experienced from their perceived gender incongruence.
So if transness isn’t an illness, then why are trans folk more subject to illness? At least part of this is due to a population-wide reluctance to receive care from the general healthcare system leading to a delay in routine healthcare. (This correlation can also be observed in cis men who are also observed to be at greater risk of severe health problems due to being less active in their healthcare.) Per 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.
We are not treated the same. Lambda Legal, on its resource page for trans patients who have experienced Health Provider Discrimination, cites two specific cases of gross negligence leading to tragic conclusions. One is the death of 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. This is the act that 21st century trans advocates hold onto as their rock in the face of Trump administration healthcare exemptions. Because of the 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.
Sometimes providers will hold services ransom in exchange for humiliation. The last time 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. Upon noting that Julian is trans, the doctor asked him: “What parts do you have?” Nevermind 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.
We are rarely seen as trans and ill, rather, as trans OR as ill. This is a more covert form of discrimination. Sometimes this comes from bias, but mostly, this is the byproduct of misinformation and of ignorance. 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 indicates that only just over half, 65% to be exact, of oncological professionals agreed confirmation of their patients' gender identity was relevant to care. Only 19% of these professionals expressed confidence in awareness of trans health needs. 70% overall showed interest in receiving more education.
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.”
This also unfortunately 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.
Transition does not exempt us from medical issues related to our natal anatomy. The prolonged, agonizing fate of Robert Eads, a trans man who was denied access to gender affirmation surgery due to transitioning later in life, is haunting. Robert was diagnosed with ovarian cancer; however, 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.
Because of the World Professional Association for Transgender Health (WPATH), there are entitlements and protocols to allow trans patients to receive affirming treatment. However, with a greater cultural bias against AFAB bodies receiving treatment that impacts their reproductive ability, 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.
For Ariel, finding a competent and trans-affirming gynaecological surgeon was not nearly as difficult as other aspects of his chronic care or his transgender care. The process of getting to that surgeon was a different story altogether. Ariel is an endometriosis patient. Endo is a manageable, yet incurable gynaecological condition which recurs even after hysterectomy, so long-term gynaecological maintenance has always been a priority for him. Leading up to surgery, Ariel did a full gynaecological work-up, including a pap test, labs and an ultrasound.
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. For 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.
So where does this leave us? It’s easy to put the onus of advocacy on trans peo:\le alone. It’s easy to say that trans patients should become educated about their legal rights as well as to enrich themselves with encyclopedic knowledge of their whole-body health. It’s easy to say that trans patients should always use the buddy system when attending appointments or when admitting into the hospital. It’s easy to refer trans patients out to specialty health centre\s. 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.
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?”
When in doubt, refer to the University of Iowa Healthcare’s TRANSCARE protocol:
Treat transgender individuals with respect, as you would for all of your patients.
Refer to transgender people by the name and pronoun associated with their gender identity.
Ask politely how they wish to be addressed if you are unsure about a person's gender identity.
Never reveal a person's transgender status, unless it is absolutely necessary for the patient's health care.
Set a high standard for inclusive care.
Concentrate on care, not curiosity. Example: it is inappropriate to ask about genital status if it is unrelated to care.
Avoid negative facial reactions and offensive language.
Remember that treating a transgender patient is not always a training opportunity.
Educate yourself and others about transgender health care and issues.
When you’re chronically ill you get to see a different side of the medical field. One that you could live the rest of your life without seeing. Unfortunately, when you’re in and out of the system you don’t really have a choice. You get up close and personal with all the horrors revealed. You begin to analyze all the cracks and leaks pouring in. Sometimes you get to experience it first hand being by assaulted in the emergency room, other times it rears an ugly head in the form of insurance phone calls and arguments.
As transgender patients regularly in the system, we continue not only to survive but to thrive. (Do you recall the beginning where we told you that we are an unstoppable force?) But that hasn’t been the case for many of our trans siblings, and that may not always be the case for us without public and professional support. At this point in time, many medical professionals do not know how to appropriately interact with transgender/non-binary individuals. Instead they let bias and misconceptions rule their thoughts and actions. They walk away unscathed, but it’s us who suffer and leave with more scars than we started with.
We have a long way to go. Don’t allow yourself to turn the other cheek even if this doesn’t affect you directly.
Ariel is a life-long 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 instagram and his wordpress blog.
Julian: Julian is a life coach for the LGBTQ and chronic illness communities. He blogs about his life as a transgender patient with Ehlers Danlos Syndrome as well as his service dog Atlas and his wife Jaina.