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

Sydney Ward is a business owner and part-time yoga instructor who lives outside of Minneapolis with their partner Tom and cats Luna and Pandora. She is bisexual and nonbinary, specifically gender queer. Sydney shared initially shared their story in the summer 2022 issue of Pathlight. Pathlight is the Pulmonary Hypertension Association’s quarterly member magazine.

By Sydney Ward

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 self-advocacy fatigue many of us deal with.

Treatment challenges
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 got a different care coordinator and sought 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.

Words matter
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. 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 fill in 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?”

Inspired by Sydney? Share your story in PHA’s Right Heart Blog.