My Battle with Long COVID
From the front desk staff to nurses to doctors, a Jefferson patient tells us how we can pitch in to provide safe and inclusive health care for the transgender community.
“The front desk calls my name, which according to my medical records, is still Elise Mouzon,” says Rome Mouzon, a transgender man, who goes by his chosen name. “I go up to check in and there is immediate confusion. I look like a man, so who they see doesn’t match the name they just called,” says Rome. “Are you sure you’re in the right place? Are you Ms. Mouzon? What is your real name? These are all questions I’ve got.”
Going to the doctor’s office can be nerve-wracking for anyone, but patients who identify as transgender often experience further barriers to a smooth and safe visit. One survey of more than 27,000 transgender people showed that 33% of respondents reported having at least one negative experience with a healthcare provider related to their gender identity, which included having to teach the provider about being transgender. In fact, researchers in the urology department at Jefferson Health surveyed 67 members of an outpatient urology clinic, including administrative staff, nurses and doctors, and found that more than 80% of them felt they didn’t have the necessary training to care for transgender patients.
Rome candidly shared with us his health care experiences at Jefferson Health and elsewhere, through two cancer diagnoses and significant mental health challenges. Through it all, he remains optimistic, open, and advocates for himself and his community. “We all need to be allies of each other,” he says with a bright smile. “Let us help you, help us.”
Here are a few things he wishes healthcare providers and staff knew about caring for transgender patients:
I Wish They Knew How to Approach My Name With Sensitivity
One of the biggest hurdles transgender patients face is the updating of their identification cards and electronic medical records. The problem starts at the front desk when checking in. “I try to explain and show them ID which has my name and gender changed,” says Rome. “I tell them that they don’t have to call me Miss or Sir, just use my name. You can just tell from the body language that the person feels uncertain and suspicious.” Awkward silences and nervous laughter sometimes ensue. Rome explains that he doesn’t find these interactions negative, but rather an indication that front line staff don’t have enough knowledge of the transgender community to react with sensitivity. “I do think they should be given the proper training. The medical field is all about constant learning, right? Why shouldn’t there be a class on how to care for LGBTQIA patients?”
Although there’s certainly more work to be done, an interdisciplinary team of Jefferson faculty from the departments of physical therapy and occupational therapy, led by Karla Bell,Audrey Zapletal, Tracey Vause-Earland and Susan Toth-Cohen, is piloting a program aimed at training faculty in various health professions in sensitivity and competency to care for patients of sexual and gender minorities. The ultimate goal is to have this knowledge integrated into the curriculum.
I Wish They Knew That It’s OK to Ask Questions
“When I was in the recovery room after my hysterectomy, I remember a nurse came in and was shocked to see me, because my presence didn’t match the name on my band. She walked out and called another nurse. They walked in, looked at me, walked back out. They did this a few times till they finally asked to check my band,” Rome recalls. They explained that there were instances of people switching bands so they wanted to make sure he was in the right place. “That hurt, because when you’ve just had a major procedure and you’re in pain, you just need a little TLC,” says Rome. “But I also don’t know why healthcare providers put so much pressure on themselves – just ask me. It’s ok to explain that you were confused because of the name on the band, but now that you see me, ask me what name and gender I would prefer. It’s OK to ask.”
Why not include us in the pamphlets? That way healthcare providers and staff know what we look like, and realize that a patient could come in and look like Action Jackson, but really be a Sally.
I Wish They Knew That It Helps To Be Open
Rome admits that many individuals in his community are not as open and honest with their doctors as he is, which means that their questions often go unanswered. “I think in general a lot of men don’t go to the doctor. So when doctors see my male presence and see how open I am about what I need, they’re surprised initially, but appreciate it. That openness goes both ways.” Rome was treated for cervical cancer at Jefferson Health by Dr. Edward Buchanan. “He was so open to learning about my experience. The whole care team was constantly in touch with me throughout my treatment,” explains Rome. “One of the nurses even took the initiative to change the gender marker on my paperwork, and she made sure to fill in the other nurses. I really appreciated that, because the next time I came in, it wasn’t a hassle.”
Transgender patients report that they are less likely to seek out preventative health care and delay follow-up appointments out of fear of discrimination and because of difficulty finding a doctor who is open to treating LGBTQIA patients. “It would be so nice if you go to a doctor’s website, and there was a little rainbow flag or some kind of marker that lets me know that this doctor has experience in seeing patients from my community,” says Rome. “There is always a safety issue as a transgender patient – what a cis-person feels is safe is very different from what a trans-person feels is safe. Any precaution that we can take, even if it’s something as simple as a rainbow flag next to a doctor’s name, is essential.”
I Wish They Knew That Representation Matters
With the growth of advocacy movements like LGBTQIA Pride and representation on mainstream media, there is more awareness of the transgender community. “Things are a lot different from when I first started transitioning, there is more dialogue and more spaces that we can be seen,” says Rome. “But sometimes I think the medical field is lagging behind. I’ve met doctors who have never met a transgender patient. You can have all the medical knowledge and sensitivity training in the world, but there are some things that can only come from a real-life interaction.”
For example, Rome explains every person’s transition is different, and it’s helpful for healthcare providers and staff to know that physical traits can vary. “It’s the small things like, sometimes in the earliest stages of female to male hormone transition, our voices start to crack. Some of us sound like robots, and that can take people aback.”
Rome also cites a lack of inclusivity in doctor’s offices, for example, gender-specific bathrooms and gendered signs and pamphlets. “Why not hang some pictures of transgender patients? Why not include us in the pamphlets? That way healthcare providers and staff know what we look like, and realize the possibility that a patient could come in and look like Action Jackson, but really be a Sally.”
I Wish They Knew About Our Unique Mental Health Challenges
Family rejection, discrimination when trying to find a job or an apartment, verbal and physical harassment, all put transgender individuals at higher risk for mental illness. A shocking 40% of transgender individuals attempt suicide over their lifetime.
“It’s hard to find therapists at all, because there’s such a shortage. But then finding a therapist who understands specific challenges to the transgender community is even harder,” says Rome. “I was told that I have an identity disorder. As a transgender person, there is a mental fracture and chemical imbalance that comes with living in a body that you don’t identify with. So that diagnosis didn’t seem right to me, and it felt hurtful.”
I Wish They Knew That Our Care Is Complex
The transgender community is also at greater risk for HIV, and the treatment they need for it is not as straightforward as other patients. As part of their transition, many transgender patients take hormone replacement therapy to achieve desirable characteristics of the opposite gender.
“Sometimes the medications to treat HIV can counteract the hormones. Or sometimes the medications don’t always mix with the mood stabilizers or anti-depressants that we may be on to treat our mental health conditions,” says Rome. “Some doctors don’t pay attention to that.”
I Wish They Knew How Hormone Therapy Affects My Risk for Disease
“As a black person, I know I’m at risk for heart attacks, strokes, cancer, diabetes, and high cholesterol. But I’ve been on hormone therapy since 2001, so that makes my risk two times higher than the average black male or black female,” explains Rome.
Long-term exposure to hormone therapy can also increase the risk of cancer. As a two-time cancer survivor, Rome is naturally concerned about screenings that he should keep up with. “I’m going to have my top-surgery soon, and I’m wondering, do they have to check for breast cancer? Can I still get breast cancer after my top surgery?”
Currently, there are no standardized cancer screening guidelines for transgender patients. In a survey conducted of 200 transgender patients, 70% said they weren’t aware of what age to start cancer screening, and 60% said they did not know what type of screening they should get. Several Jefferson researchers including Nicole Simone, MD, and Amy Leader, PhD, are working to bridge this gap. “Cancer screening for transgender patients depends on their surgical procedures and exposure to hormone therapy,” says Dr. Simone, associate professor and radiation oncologist. “We’re hoping that by establishing clearer guidelines we’ll take the guesswork out of screening procedures, making it easier for patients to access them and have their health insurance cover them.” Adds Dr. Leader, associate professor of population science in medical oncology, “Once guidelines are established, it will be critical to disseminate this information among both providers and patients to make sure there is clear messaging about guidelines.
I Wish They Knew That We’re All In This Together
A doctor and patient meeting for the first time is a uniquely intimate experience. “I do what I can to break the ice,” says Rome. “I wish sometimes that doctors felt comfortable talking to me as a person, not just a patient. You’d be surprised by how much we can learn from each other. If we all work together, we can make a more welcoming atmosphere for all communities.”