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

Singer/actor Stephen Carter-Hicks is long-time volunteer for the Pulmonary Hypertension Association. He initially shared this story in the summer 2022 issue of Pathlight, PHA’s quarterly member magazine.

By Stephen Carter-Hicks

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 pulmonary arterial hypertension (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.

Feeling isolated
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.

Watch Stephen bring joy to PHA 2022 International PH Conference and Scientific Sessions with this performance.

Help inspire others in the PH community. Share your story with PHA’s Right Heart Blog.