Health & Fit LGBTQ patients reveal their exhausting, infuriating, and surprisingly common struggles at the doctor's office

04:37  03 may  2018
04:37  03 may  2018 Source:   msn.com

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LGBTQ patients reveal their exhausting , infuriating , and surprisingly common struggles at the doctor ' s office . Caroline Praderio. The patient then revealed that they sometimes dressed like a woman. Bast asked if the patient wanted to be called by a different name — perhaps a female one.

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a man sitting on a table: LGBTQ healthcare 4x3 © Provided by Business Insider Inc LGBTQ healthcare 4x3 Erin Armstrong was just 20 years old when — during an ordinary bike ride — she felt a shooting pain in her chest. It was 2005 and Armstrong, a transgender woman, had recently begun taking hormones as part of a male-to-female transition.

But it wasn't going exactly as planned. She had been to a doctor in Utah, seeking a hormone prescription. But Armstrong recalls that the doctor said she'd never seen a trans patient, wasn't familiar with hormone therapy, and wasn't able to help.

So she turned to the internet. Armstrong ordered estrogen online and took the hormones on her own, using the information she found online to guess at an appropriate dose.

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It was only a few months later that the mysterious chest pain struck.

"I definitely thought it was a heart attack at the time, which seemed absurd because I was barely 20," Armstrong, now 33, told INSIDER.

It may not have been such an absurd thought. Back then, in addition to taking estrogen, Armstrong was also smoking cigarettes. Both are risk factors for blood clots, which can cause heart attacks.

Courtesy Erin Armstrong

But Armstrong didn't get an official diagnosis that day. After waiting in a local emergency room, the pain subsided. She didn't have insurance at the time, and, fearing high out-of-pocket costs, she slipped out of the hospital.

"That was what healthcare was for me," Armstrong said, recounting the incident a decade later in a vlog on her YouTube channel, Grishno — she bills herself as the first transgender person to ever document a transition on the site, and she's amassed more than six million total views since uploading her first video in 2006.

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Later, she moved to New York City and continued her transition safely with the help of a doctor who specialized in trans care. Now she lives in California, and she told INSIDER that, even today, trips to the doctor's office can still induce stress.

"I don't know what the next doctor is going to know, or whether they'll even treat me with respect," she said. "So I put off finding a new doctor as long as I can. It's not the best way to take care of your physical health."

But for trans people like Armstrong — and other members of the lesbian, gay, bisexual, and transgender, and queer/questioning (LGBTQ) community — it's an all-too-familiar reality.

There's a gap between the health of LGBTQ people and their heterosexual peers.

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As a whole, LGBTQ people often experience worse health outcomes than their heterosexual and cisgender peers. Experts call these gaps "health disparities." On its website, the US Office of Disease Prevention and Health Promotion lists a number of alarming ones identified by researchers thus far.

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Lesbian women are less likely to get cancer screenings like Pap tests and mammograms, for example, and lesbian and bisexual women are more likely to be overweight or obese — both risk factors for a host of health issues. Young gay and bisexual men — especially gay and bisexual men of color — disproportionately bear the burden of new HIV diagnoses. LGBT youth are 2 to 3 times more likely to attempt suicide. Transgender people of all ages experience higher rates of STIs, mental health issues, and suicide. Finally, LGBTQ populations have higher rates of alcohol, smoking, and other drug use.

These disparities exist for a number of reasons. There's the ongoing stress caused by living in a society where LGBTQ people are stigmatized and subject to violence, for one. The lower rate of insurance coverage among the LGBT community factors in, too.

But even when LGBTQ patients do have access to medical care, they can struggle to find providers who can meet their needs. Doctors may lack the knowledge and training to address LGBTQ-specific concerns. And sometimes, doctors simply lack the willingness to treat LGBTQ patients with compassion and respect — or even treat them at all.

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This lack of "culturally competent care," as it's called, is another driver of LGBTQ health disparities. And as INSIDER learned in interviews with members of the community, it can make for some annoying, uncomfortable, even devastating experiences in the doctor's office.

Doctors often assume patients are straight — and it's more than just awkward.

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There are a few common themes in doctors-office anecdotes from LGBTQ people. One of them is doctors assuming heterosexuality as the default — for example, urging a female patient to use contraception before asking whether or not she has sex with men.

Ariana, a 26-year-old woman who is asexual and a lesbian, told INSIDER these assumptions are a recurring annoyance. (She asked to be identified by her first name only to protect her privacy.)

"[Doctors] assume that I'm straight because I am very femme-looking," she said. "And it's kind of annoying. Exhausting is a good way to put it."

At times, though, these assumptions aren't just exhausting — they're missed opportunities for proper care.

The Fenway Institute — a renowned hub for LGBTQ health research — once ran a focus group for young black gay men. Dr. Sean Cahill, the institute's director of health policy research, still remembers one story he heard from a participant in that focus group. The young man was from Jackson, Mississippi, Cahill told INSIDER, and he'd had an unsettling experience during an HIV test.

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"[Testers are] supposed to ask, 'Do you have sex with men, women, or both?' And [one tester] said, 'Well I'm sure you don't take it up the a--, so I'm not even going to ask you that question,'" Cahill said. "So this guy goes in to get an HIV test and that's his experience. Now he's not going to disclose that he's a gay man to that tester, and that's ... sending a message to him that he should not disclose that he is gay. And if you don't disclose that you're gay, you're not going to get the right sexual health care that you need to not get HIV or whatever the STI is that you're at risk of."

Assumptions like these — ones that shame patients into silence — won't help to close the health gaps LGBTQ face. If anything, they only prolong the disparities.

Sometimes doctors simply lack knowledge of LGBTQ-specific health issues.

Kassie, who's a lesbian, can still recall the appointment when she got her first Pap test. She was 20 years old at the time, and she'd had sex with a woman for the first time just a month prior. (She also asked to use her first name only to protect her privacy.)

"So they go through all those questions at the beginning — they say, 'Are you sexually active?' That was the first time I had a doctor's appointment where I had to say yes," Kassie, now 26, told INSIDER.

The doctor assumed that Kassie was having sex with men, and started to admonish her when she admitted that she wasn't using birth control.

a hand holding a cell phone: birth control pills © Provided by Business Insider Inc birth control pills

"So then I had to say 'I'm a lesbian, I sleep with women.' And his whole face just fell. He just said, 'Oh' and moved on to the next question," she recalled.

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The doctor didn't seem to know much about sex between women — and the fact that women can still get STIs from unsafe sex with female partners. Or, if he did know, he didn't speak up.

"I feel like maybe a lot of straight people might see that moment as not such a big deal. But the thing is he didn't address how I could have safe sex as a queer woman," Kassie said. "He wasn't offensive. But it affects queer women's health because nobody tells us how to protect ourselves."

A doctor's lack of knowledge can also make LGBTQ patients feel scared.

Most of us expect medical professionals to be experts on our bodies — to be sleuths who can detect minute warning signs that something might be wrong. It is a terrifying, disheartening prospect to conclude that your doctor may not be that kind of expert for you.

INSIDER spoke with a couple, both transgender men, who know that feeling intimately. They live in the southern US and run a YouTube channel together, publishing vlogs about their hormone therapy, surgeries, and other aspects of daily life as trans men. Online, they go by the pseudonyms "Thumb" and "Toe" — their channel is "The Thumb & Toe Show" — and they asked to use those names here, too, to protect their privacy.

Courtesy The Thumb & Toe Show

"We find ourselves Googling things and then relaying that to the doctor. If they don't know the answer they turn to Google the same way we would," Thumb, 28, told INSIDER. "And it can be kind of scary."

"It is weird when you're talking to your doctor on the phone about the issues you're having, and she's doing the same thing you just did, which is Google," Toe, 30, added.

Last year, Toe underwent a hysterectomy as part of his transition. Following the surgery, Toe said that his doctor made seemingly haphazard adjustments to his dose of male hormones. After massive swings in hormone levels, he experienced irritation, agitation, depression, and panic attacks.

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"I don't feel like I should have to be my own doctor but that's kind of the place where we're at right now. It's the most frustrating thing to be told that they don't know how to help you. I feel like a lab rat."

Thumb and Toe also said they've noticed providers sometimes try to pin all of a trans person's health problems on hormone treatment. That's something Chase Ross, a transgender man and the creator of the YouTube channel uppercaseCHASE1, has also experienced.

Courtesy Chase Ross

"I've had a lot of doctors try to blame me being trans and/or me being on hormones with the issues I am having when it is literally not related at all, [like with] an ear infection or my injured knee," Ross, 27, told INSIDER.

Too often, Ross said, doctors have peppered him with invasive questions that have little or nothing to do with the problem that brought him into the office.

"I have a lot of health issues right now with my stomach and I've had to explain my whole health history to so many doctors and it is so exhausting hearing question after question about my personal transition when it is completely not related to why my stomach hurts so much — for example, asking me about name changes," he said. "It really makes me reluctant to see doctors sometimes."

In the worst cases, doctors may discriminate and refuse treatment.

In 2010, a survey conducted by Lambda Legal asked 5,000 LGBT people and people living with HIV about their time spent in doctor's offices. The results were sobering.

"More than half of all respondents reported that they have experienced at least one of the following types of discrimination in care: being refused needed care; health care professionals refusing to touch them or using excessive precautions; health care professionals using harsh or abusive language; being blamed for their health status; or health care professionals being physically rough or abusive," the final report read.

It seems transgender patients, in particular, are more likely to be flat-out denied medical care. In the Lambda Legal survey, 27% of trans and gender non-conforming patients said they'd been refused care, compared to 8% of lesbian, gay, and bisexual respondents. That same year, a separate study from National LGBTQ Task Force surveyed 7,000 transgender people and found that almost one in five reported being denied care because of their gender identity.

The overall effect is that trans patients are sometimes forced to choose from a limited pool of doctors. Toe, for example, said he struggled to find a doctor to provide hormone therapy in his geographic area.

Courtesy Thumb & Toe Show

"It is really frustrating, with the hormone problem I'm having right now, that this is the only place I can go unless I want to drive 200 miles in either direction," he said. "It's almost like they're holding my wellbeing hostage."

And when faced with a complete lack of willing providers, trans people may be compelled to self-treat. This is especially common with hormone therapy.

The World Professional Association for Trans Health notes that, for some trans people, hormones are medically necessary treatment. If a trans person can't or won't get hormones through a doctor, they may obtain and start taking them without medical oversight — and that can have dangerous ramifications. Such was the case with Armstrong — the trans woman struck down by chest pain after taking estrogen purchased online. She's not the only one who's been forced to make this choice.

In 2015, a small study surveyed 314 trans women in San Francisco and found that 49% were taking hormones not prescribed by a doctor. Different studies show that the prevalence of non-prescribed hormone use can swing wildly — from as low as 3% in some trans populations up to 71% in others.

But some doctors are giving compassionate care to LGBTQ patients — and it has a huge impact.

Catherine Bast didn't always want to be a doctor. She grew up in a conservative Christian home, got a degree in art history, married a man, had three children, and became a certified midwife.

Then, in 2006, she decided she wanted to study medicine.

"I went back to school and that year, I fell in love with myself, with my ability to think, with my ability to study, and I also fell in love with the woman I was riding back and forth to school with," Bast told INSIDER. "All of a sudden there was this [thought] like, I think this has been going on my whole life. I think that I've been falling in love with women my whole life."

Coming out as a lesbian inspired Bast to focus her studies on LGBTQ health and care of transgender patients in particular.

"I discovered that I really liked doing trans care and that there was a huge need," she said. "By the end of my [three years] in residency, I had 80 trans patients. People who wanted hormones, people who wanted trans-friendly primary care — I mean, the whole gamut."

In northern Indiana, where Bast studied medicine and still lives, trans care was sparse. Some of those 80 patients, she said, were traveling two or three hours to see her.

a man wearing glasses and smiling at the camera: tree katie bast © Provided by Business Insider Inc tree katie bast Courtesy Catherine Bast

The glaring need prompted Bast and her partner to launch an LGBTQ-friendly healthcare practice mere weeks after her graduation from medical school. Mosaic Health and Healing Arts opened its doors in July 2016 — and Bast has already had to hire more providers to keep up with surging demand. She said it is the first family practice in the state of Indiana to be openly welcoming and accepting of LGBTQ patients — and she's seen firsthand how transformative this type of healthcare environment can be.

"[There was] a patient who came to Mosaic in the very early days, again from a very conservative religious background, who had turned to drugs to survive," Bast said. "I remember the first time I looked at this person who presented as male but had nail polish on."

The patient then revealed that they sometimes dressed like a woman. Bast asked if the patient wanted to be called by a different name — perhaps a female one.

"She told me, and from then on I called her by that name," Bast said. "She looked me in the eye and started to cry. And this person now is drug-free and an elder in a church and working a job and I just think, 'Oh my word, it doesn't get any better than this.' And I realized recently that what I'm doing now is very similar to midwifery. I'm helping people give birth to themselves."

Some of the people INSIDER interviewed also recalled some positive experiences with doctors.

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Even small gestures leave lasting impressions.

"I started seeing an endocrinologist a few months ago and it was a question on their patient form when you checked in," Kassie said. "It just had an open-ended, how-do-you-identify-your-sexuality question. And that was the first time I've ever seen that on a patient form, so it was really exciting."

Ross recalled one trip to a walk-in clinic when he needed treatment for a urinary tract infection. When the doctor asked what medications he was on, Ross mentioned taking testosterone. At first the doctor was confused — why would a man so young need to take the hormone?

"And I said, 'I'm trans,' and he looked at me and said, 'Ah, well that's a good reason to be on it' and laughed," Ross said. "To this day, this is one of [my] 'best' experiences with doctors because it was lighthearted and it wasn't a big deal."

A few years ago, Armstrong starting seeing a nurse practitioner who put in extra effort to learn about the health of trans women.

"This nurse practitioner didn't have all the answers, but when she didn't know, she would find out," Armstrong said. "For example, I had no idea whether or not I should be seeing a [gynecologist] after undergoing genital reassignment surgery, she didn't either. The next time I saw her she had all sorts of information about the topic that I'd never heard. It was amazing. I felt like I had a partner keeping me healthy."

Artist Max Neuman, 27, a queer gay man, had a similar experience in New York City.

"The doctor I see isn't gay, but he did research on the 'gay' drug I asked him about — PrEP," he said. (PrEP, or pre-exposure prophylaxis, is a medication that, taken consistently, reduces the risk of HIV infection by 92%.) "And there's positive imagery about LGBT sexual health all over. I know it's a bubble, but this city makes me feel really taken care of."

There have been some victories in the fight to eliminate LGBTQ health disparities.

One highlight, Cahill said, is the Affordable Care Act (ACA), the healthcare reform law that took effect in 2010.

"We have data that show that about 22% of lesbian, gay, and bisexual people were uninsured prior to the ACA being implemented. And that's been cut in half, so that's incredible," he said. "We don't have as much good data for trans people but we know we've seen a decline there as well."

Cahill also noted that The National LGBT Health Education Center — a project of the Fenway Institute, where he works — has spent the last seven years teaching health centers, hospitals, and providers how to better serve LGBTQ patients. Other organizations are doing this type of work, too, he added.

"More healthcare providers are being trained in what are the unique health issues affecting LGBT people and how to provide affirming, culturally competent care," Cahill said. "So knowing that if you're treating a patient who's a transgender man, you should offer that person a Pap test. If you're treating a transgender woman you should screen for prostate cancer above a certain age. More and more providers are able to provide that kind of care, which is a good thing."

There are resources for locating LGBTQ-friendly doctors, too. The Gay and Lesbian Medical Association (GMLA), for example, maintains a database of more than 2,000 providers in the US and Canada who identify as LGBTQ-welcoming. The OutList, Lighthouse, and mytranshealth also help connect patients with culturally competent providers.

LGBTQ health disparities are complex. Respecting LGBTQ patients is simple.

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Finally closing LGBTQ health gaps will take work. Doctors need more training in LGBTQ-specific health issues and how to address them. LGBTQ people need a world in which they're no longer subject to stigma and violence.

But culturally competent care begins with something simpler, something far easier to accomplish: Respect. It takes a willingness to listen and to treat people — even those who seem vastly different from us — as human beings.

"[To] stop making assumptions and really listen to us is really important," Ariana said. "We are human. We have medical issues just like everyone else."

"Sometimes we get in our circle and think that everybody looks like us and acts like us and is like us and we forget that there's a wide diversity of human experience," Bast said. "I think the most important thing is to just open your mind. Don't make assumptions. Just come at people as people. Let them tell you who they are."

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