Queer Representation in the PH Community

STEPHEN CARTER-HICKS AND SYDNEY WARD share how pulmonary arterial hypertension (PAH) intersects with their LBGTQ+ identities. Stephen is the keynote speaker for the closing session at PHA 2022 International PH Conference and Scientific Sessions. Sydney is a business owner and part-time yoga instructor. Stephen and Sydney share their stories for Pride Month, which celebrates the lesbian, gay, bisexual, transgender, queer, intersex and asexual community.

I am a gay man, an entertainer, a singer and actor, and a Christian. I’m a very spiritual person. These days I work as the choir director for a local church, but I have sung on Broadway and toured nationally with several productions, including as Old Deuteronomy in “Cats.”

I live in northern Virginia with my 91-year-old mother. I had to stop touring when my PAH symptoms started getting bad. I would nearly black out while trying to hold a note. It took about five years to finally get the right diagnosis.

When I first heard what it was, all this information made me think I was going to die. I drove to my cardiologist’s office in tears. My cardiologist, Zia Khan, M.D., told me, “OK now, Miss Thing, calm down.” He is a wonderful doctor who did a lot early on to guide me through my new diagnosis.

PAINFUL CONNECTIONS

In those early days, I felt incredibly alone. I knew no one with PH, and it was frightening to try to tell my family, friends and loved ones. As a 61-year-old gay man, the stigma of having something that's killing me brought back the shame and fear of the AIDS crisis.

Hearing I might have only three to five years to live brought back many painful experiences of that time, such as when my partner and I learned he was HIV-positive. My partner, who was a director in New York, absolutely didn’t want anyone to know. Although the Aids Coalition to Unleash Power (ACT UP) was big at the time, he knew opening up about his HIV status would ruin his career.

Some of those same fears came back with my PAH, such as not knowing how to explain it to other people — especially when I thought I wouldn’t have many more years left.

‘I want to try to find the queer community within PHA’s community and reach out to them.’

I’m mostly very “out” about my PAH. It’s something more people need to know about, and I love to tell my story to anyone who will listen.

When it comes to dating, I still find myself feeling closeted, like I can’t talk about it. PAH has had a real impact in the way I approach men or think about who might show interest in me. Often

when I’ve tried to tell a guy I’ve been talking to that I have PAH, explain how I can’t do stairs very well, or have these limitations, they’ll just drop me. They don’t want to deal with that. There is little queer representation within the PH community. As a single, gay man, I feel very afraid. It’s hard to feel loved or that anyone will be there for me, and it becomes difficult to heal or stay optimistic.

When I’m advocating for myself, going to doctor appointments alone, or waiting hours on the phone and not getting help I need, sometimes I feel like it’s not worth the fight. There’s a feeling of isolation at the society level.

What drives me now is helping others and raising awareness about PAH. I want to try to find the queer community within PHA’s community and reach out to them. I want to bring hope and joy and a bit of laughter to another gay man or woman or nonbinary person. If we can laugh with each other, then I’ve done my job.

Life as a queer person with PAH is really hard, but I want to give the message that it gets better. If I can inspire even one person, then I know I’m doing the right thing.

Sydney Ward

I live outside of Minneapolis with my partner Tom and our two cats, Luna and Pandora. I am bisexual and nonbinary, specifically gender queer. My pronouns are she/her/hers and they/them/theirs.

I run a business that provides tarot readings, Reiki-based energy healing, mentorship and workshops on meditation and other spiritual topics. I’m a firm believer in modern medicine and treat my work as complementary to conventional science-based therapies. I also work part-time as a yoga instructor. The wellness center has been wonderfully supportive in allowing me to show up at work as my whole, authentic self.

I have idiopathic PAH and publicly identify as disabled. I find “dynamically disabled” feels especially apt and reflects my varied abilities depending on the day. I recently was diagnosed with ADHD and have noticed how this condition has affected my ability to get care. It makes it more challenging to schedule tests several months out and to remember appointments, especially with care facilities that rely on a lot of automation and less direct, personal interaction and outreach.

Being nonbinary also affects my PH care. I mention my identities when the situation feels natural, and I’m open about them if someone asks. However, I choose not to be out about my gender with my care team. They all use she/ her pronouns for me. I haven’t told them I also use they/ them/theirs. I deal with enough other challenges in receiving quality care, so I’ve chosen to let this go due to the selfadvocacy fatigue many of us deal with.

‘My experiences with PAH taught me valuable self-advocacy skills that have helped with coming out as queer.’

I’m not on certain treatments anymore because I feel infantilized being observed when taking a monthly pregnancy test to continue the prescribed treatment. In one instance, my care coordinator promised to provide a less intrusive alternative, but that didn’t happen. That, among other things, ended my trust of that coordinator. I chose to get a different care coordinator and am seeking care at a more supportive clinic.

On the other hand, my experiences with PAH taught me valuable self-advocacy skills that have helped with coming out as queer. I had to learn to focus on doing the best I can for myself and the people I care about and disregard people’s assumptions — whether about my gender and sexuality or my illness and disability — that I’m “just doing it for attention.”

Some folks with marginalized identities have had to develop a thick skin and don’t care how people react to them. My experience is more about grieving the loss of my expectations and desires and becoming comfortable with the grief process than growing a thicker skin. I like caring, and I don’t want to stop caring.

I would like to tell the LGBTQIA+ and PH communities, or really all marginalized communities, that access and inclusion goes beyond one community’s needs and identity. I have been in supposedly inclusive spaces for disability or chronic illness communities that do things that exclude queer identities.

‘Access and inclusion goes beyond one community’s needs and identity.’

Similarly, I have been in queer-inclusive spaces that don’t consider disabled folks. Words matter. I’d like to see forms with options to fillin your own gender identity, events that allow more than one guest for those with more than one romantic partner, options that allow asexual people to identify someone significant in their life but not in a traditional romantic way.

For those with serious chronic illnesses, navigating this country’s medical system as a person with disabilities is already exhausting. But having a queer identity within this system makes it so much harder to receive quality care, especially gender-affirming quality care.

When communities don’t consider the needs and experiences of the full diverse range of their own members, people at the intersection of multiple identities are forced to decide, “Which one will I show up for today? Which identity will I be present with today?”