From the Patient’s Perspective: Improving Quality of Care for the LGBTQIA+ Community With Reverend Sean Parker Dennison
At the recent 47th Annual Oncology Nursing Society (ONS) Congress, Reverend Sean Parker Dennison, alongside three other professionals, held a panel that explored the topic of improving quality of care for LGBTQIA+ individuals with cancer. In this follow-up interview with Oncology Data Advisor, Reverend Sean expands on their thoughts and provides the valuable perspective of their personal experience as a transgender patient in the cancer care community.
Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, I am joined by Reverend Sean Parker Dennison of Rogue Valley Unitarian Universalist Fellowship in Ashland, Oregon. Recently, Reverend Sean spoke at ONS Congress regarding the topic of improving quality of care for the LGBTQIA+ community. Thank you again, Reverend Sean, for meeting with us today. Could you go ahead and introduce yourself and talk a bit about your interests and what you do?
Rev. Sean Parker Dennison: Sure. My name is Sean Parker Dennison. I'm a Unitarian Universalist minister in Oregon. I'm also a transgender man, just celebrated 25 years since I came out. So, not someone who did this yesterday—I've been living as Sean for 25 years. And I'm an artist. I love to paint and write poetry and take photographs. And I have grandkids, lots of things that keep me interested and busy and happy.
Oncology Data Advisor: Thank you for sharing that with us and congratulations. I know it was 25 years ago, but congratulations on your transition. You're genuinely a pioneer and it's very inspiring.
So, first question I wanted to ask you: transgender individuals often feel vulnerable when dealing with health care professionals. What can health care professionals do to make transgender patients feel more comfortable about seeking health care?
Rev. Sean: Well, vulnerability is the key word, because I'm pretty privileged as a transgender person goes in that I have a full-time job, a community, private insurance, all these things. Still, when I am dealing with health care, I am at my very most vulnerable. I know this is an oncology thing, and so by the time you get that many steps into a process, you've been in a vulnerable situation. At every point, every little point up to that, I've had to come out to the receptionist sometimes because it's a women's clinic. And here I am. The cancer that I had, which is part of the story too, was endometrial cancer. So, I was in a women's clinic and they would try to tell me I was in the wrong place. There was just this ongoing vulnerability, but it was also just an annoying, hard thing to say again and again, "No, this is who I am. I'm in the right place. Look on your schedule. I have an appointment." So on and so forth.
And that's the easy part, right? That's before your clothes are off or you're feeling really vulnerable with a clinician who has a lot of power. Many, many times, we talk about trans broken arm syndrome. So, the care can get waylaid by the transness. "Oh, we need to talk about your hormone regimen." "No, I'm here for something else." I always feel vulnerable. My blood pressure is always through the roof. I have to take out my phone and show them the pictures of what my blood pressure was at home because I have white coat syndrome—well earned by lots of experiences. So, there's vulnerability and trying to imagine yourself in that position, having had to come out, having had to correct people, having had to prove that you're in the right place to get the care you need, imagining that. And then on top of that, here we have this whole cultural thing going on right now where trans people are being treated as though they're evil, bad, hurting children, or it's not a real thing. It's some kind of trick.
That makes me vulnerable, too, in those moments, because I don't know, when I walk into a clinic or a hospital or whatever situation, who thinks what about transgender people. There's no way for me to know that. When I was talking to the nurses at the conference, one of the things I said is if you're in any supervisory position and you hear anything like, "Oh ha ha ha, that guy's here for a hysterectomy," or just, "I'm not comfortable with this," take that person off my case. I am not there to teach them right then. You can teach them later, but please just take that person off my case so I don't have to deal with whatever leaks out around the edges of their discomfort. So, I'm thinking about other things people can do to make the patient feel better. I mean, you need to look through your paperwork and make sure that there's gender "blank". It doesn't need to say M/F and then another list of things—T and Q and all those things. It can just say gender "blank". Fill in the blank.
Just today, I was trying to make an appointment at a clinic, and they said, "What's your legal sex?" Well, what do you mean by that, right? So, ask me the real question. My legal sex is male. It's been male for 24 years. But what are you, as a clinician, really needing to know? Interestingly, the young woman who was interviewing me for the intake said, "I'm so sorry that I had to ask you that." I appreciated that she knew it was an uncomfortable question, and why not make the question a better question? Those are the things that come to mind right off the top of my head. When I was having the hysterectomy, there was a particular thing that happened over and over again, which was actually an attempt to build rapport, but it didn't work. People kept making the same joke, which is, "Oh, you're transgender, you don't need these parts anyway, you don't like these parts. You don't want them."
That just hit wrong because I was there for cancer, and they were making it about me being trans. But I was still going through all the things any cancer patient goes through, which includes a lot of mixed feelings about surgeries and all sorts of things. Frankly, my transgenders did not leave me hating my body. I didn't just want to discard this part of me. So, sometimes discomfort comes out in these little jokes. If one person had made that joke, it probably would've been okay. But it literally was 5 at least, maybe 10, by the time I got through the whole process. So, be careful. When you feel like joking around, it's probably telling you something about yourself and that you're uncomfortable. If you can reframe to what's best for the patient, that's the thing to do.
Oncology Data Advisor: Completely. Thank you so much for taking the time to explain all that and going in depth, honestly. It's so good to hear an actual experience because I'm sure there are so many other people experiencing those same things. So, genuinely, thank you so much for sharing this.
Rev. Sean: One other thing I was thinking of is, you may think that your staff and your whole group are doing really well, but you actually don't know whether I'm experiencing transphobia or not in there. I told the story of being bumped into the wall over and over again by the orderly who brought me back from surgery. It was really passive aggressive. They didn't say anything, but I don't think that person usually bumps everyone into every wall, every elevator door. Because you're not there 24/7, you can't know, and I may be reactive because I'm experiencing something that you didn't see. So, just to offer that vulnerability is real, whether you think your people are contributing to it or not. It's important to know that.
Oncology Data Advisor: So, I think that actually segues greatly into the next question. For nurses and stuff that may be seeing this or are unaware, what kind of tips do you have for those kind of health care professionals when treating a transgender patient for the first time or any time?
Rev. Sean: Right. It's hard because of how the medical system is set up. But my first response is take time, slow down. I know nurses are being timed and everything's more, more, more. But... I'm scared of doctors, right? I'm scared of them now. Just, over the years, there have been so many experiences w I hate going to the doctor. Like I said, my blood pressure's always high. It's hard to find someone I feel like I can relate to. So, build rapport in relationship, beyond rapport that's just like, "Hi, how are you? Great. Did you have a good day? Yes," but "Is there anything you want to tell us about your experience with the medical establishment thus far in your life? What is the most important thing you're here for?" Because 25 years in, I'm not coming in very often anymore to talk about being trans. I'm talking about the way my body is aging, I'm talking about interesting things that are going on that I don't understand.
Take the time to treat a transgender person as a whole person and not to go right to the trans story and "Well, how long have you been on hormones?" Even that would take me 10 minutes to answer because of lack of access to care; I've been on and off hormones more times than I even can count. There's not a lot of information out there about what that does to a body, so I don't even know. I'm always scared that maybe because I couldn't stay consistently on testosterone, did I get cancer because I then wasn't able to access my testosterone regularly? My system was starting up and shutting down over and over again. I don't know. It's like what we say for any group of people. Get to know them. If someone with a disability comes in, please don't jump right to talking about their disability. Why are they there? What are they there for? What do they need? What are they hoping for?
It's the same stuff. It's harder right now because everything's in the public eye so much about transness. It's easier to get stuck in thinking that's the presenting issue, or really important. I was making an intake evaluation appointment, and she made sure to tell me that they have a therapist and a psychiatrist and all these people on stuff. It's like, "Honey, I have my own therapist." Right? None of me being trans do I need a psychiatrist for. I'm well past that part. I did that in 1997. So, it slips in there in ways that make me feel like all they noticed was that I was trans, not who I am, what I actually wanted and needed. Also, just believe your trans patient. If I say I really don't have high blood pressure, we are really, really good at doing self-evaluation because a lot of us haven't had consistent medical care. I have a blood pressure cuff, I have a glucometer, I have all a pulse oximeter, all those things. I keep good track of my health. Believe me, if I've gotten to the point where I'm in your office, I'm not trying to fool you; I'm trying to get real care.
I think the narrative about trans people that is so harmful is that, somehow, we're lying. So, if you know I was born female, somehow it comes across as I must be lying to you that I look like this and sound like this, that somehow I'm hiding something, but I'm not. I transitioned to tell the truth about who I know myself to be. I'm going to tell you the truth, so please assume, even if I'm wrong about something, right? It's what I really truly think. I really truly think I have strep throat, even though you don't see that. But believe the trans person. One of the things that is very true is you can make one mistake. You can call me the wrong pronoun or name or say something. But when you make the same mistake again, I'm not coming back, because I don't subject myself to experiences where I feel like I'm being disbelieved or misunderstood or treated as though I'm not honest or a good person. I won't put myself back in that position. You might only have one chance to get me the health care I need for the thing I really need it for.
Oncology Data Advisor: Right. The next question talks about difficulties for LGBT people to find adequate health care, and you've basically touched on those types of things. Do you maybe have any advice on how the health care team could make sure that the LGBT patients are getting adequate health care?
Rev. Sean: Well, if you are interested in LGBT health care, make that known everywhere you can think of to make it known. Put it on the posters in your office, put it on your description on the internet of your practice. Everybody thinks they're cool with LGBT folks, but I need you to celebrate it for me to walk in your door. I need to feel like, "Oh, they're not afraid of it." It's not just a box they're checking to make them look more inclusive. They're like, "This is the kind of health care I want to do." Don't be afraid to get a reputation. I mean, there are LGBT people everywhere. The word will be carried on through the community. As much as you can reflect your care, do it, overdo it, because it really is hard to find. Even today, when I'm trying to get this intake evaluation, it's because somebody sent me a news story that said they had started a trans-specific clinic.
But when I called, they said, "Oh, we don't have that. But we do have this one doctor who does take care of transgender patients." I got to a place where I think it's going to be okay, but it wasn't because it was obvious or easy. It's like a treasure hunt to find someone. Then when you need a specialist, you go through it all again, right? When I have a trusted doctor, I always ask for a referral and I specifically say I need them to be at least trans-competent; trans-friendly would be better. So, know who the other providers in your area are who you would trust if you need to refer, and call that person ahead of time if you need to and say, "This is why I'm sending this person to you, and this is what we need, and this is what we already know." Do a little extra because that will keep me in a relationship with a provider for a long time, if I feel like they know who I really am, and they try to make it better and make it easier
Oncology Data Advisor: Completely. Thank you again for the in-depth answering. I really appreciate that.
Rev. Sean: Very glad to.
Oncology Data Advisor: Again, you've basically answered all my questions through your answers and everything. With this last one, I'll ask, what advice would you give to the LGBT community to make sure that they're communicating and getting connected with the correct clinicians?
Rev. Sean: It's interesting. At ONS Congress, one of the things that I learned is that the medical providers, the nurses, the receptionists, they're kind of afraid of us. They're afraid we'll be mad if they ask the question wrong, and so on. I think there's something that we can do, which is to be really straightforward and say, "Hey, don't ask that question again in that way, here's what I need you to say," in a way that isn't attacking any one clinician. I mean, it is such a vulnerable time. In other places of my life, I'm really good at asking for what I need and standing up for myself, so I have to work on applying those skills. But really, the truth is, any LGBT person should be able to come into any medical setting and be treated as a fully human person who is in control of their own care.
I've tried a lot of different forms of meds and stuff. I know which ones worked and which ones didn't. Just because you have a favorite, listen to me, listen to me about what works or doesn't work. I'm atypical even in the way that I use hormones, because now that I'm older, I don't use a full dose. I'm not trying to masculinize anymore, so I use a very small dose. I know what that dose is and I can talk to you about it and why it's that. It's basically the dose that keeps me from feeling terrible that I don't have any sex hormones in my body. But it's not actually meant to masculinize any more or do any of the things that, in the beginning, you're trying to accomplish with a transition. I've been corrected so many times like, "Well, that's not enough." "Well, actually that is enough."
So, it's a partnership. I think, really, a lot of the work needs to be with the clinicians. We folks that are part of the LGBTQ community just need to do our best to be as honest and patient as we can. It's not easy. After 25 years, I can't believe that some people don't even know the basic answers to the questions or how to ask me about my gender. Asking my legal sex, I'm pretty sure, didn't give her the information she needs for an exam, because my legal sex is male. I'm male on my driver's license, my passport; everywhere that is a legal document, I'm male. But she was trying to figure out, am I male becoming male or feminizing? How was I born? Am I in the middle? She's trying to ask a really complex question with a really clumsy tool. So, I hope that helps.
Oncology Data Advisor: Yeah, 100%. That was the last question, so I want to, again, thank you for your time today, Reverend Sean. This has been really insightful and important, and I can't thank you enough.
Rev. Sean: Great. Thank you so much for doing it.
About Reverend Sean Parker Dennison
Reverend Sean Parker Dennison is a minister at Rogue Valley Unitarian Universalist Fellowship in Ashland, Oregon, and is one of the first transgender ministers to be ordained in Unitarian Universalism, in 2000. They cofounded a support and advocacy group for Unitarian Universalist transgender and nonbinary religious leaders known as Transgender Religious Professional UUs Together (TRUUsT). Rev. Sean is a father of one and a grandfather of three, as well as a painter, poet, and photographer.
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Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.