A Lifelong Advocate Learns to Advocate for Herself

By Kiara St. James - Last Updated: February 23, 2023

I have spent my life advocating for transgender and non-binary people in New York.

I have a busy schedule meeting with community organizers, legislators, and donors. And although I thought I was taking care of myself and my community, my cancer diagnosis forced me to learn what it really means to advocate for yourself.

I have always been proactive about my health and was very proud of the fact that I made a primary care visit a priority. I had a colonoscopy a year or so before my diagnosis and was ecstatic to know that I was cleared of colon cancer for the next 10 years. So, I was shocked when the head of the Oncology Department at Mount Sinai West informed me solemnly that I had a rare and very aggressive type of cancer! As those words sunk in, I felt like I was watching someone in a sad movie. I was disconnected and dissociated for weeks. I cried every day! I’ve always been the strong one—the one folks came to when they were in distress. And yet, there I sat processing my new life—and imminent death.

I processed my diagnosis with the support of a few close friends and family. But how could this be? I had a primary care doctor whom I saw regularly. I had to admit that, for almost two years, I had been feeling more exhausted than usual. I wasn’t walking as much as usual, and when I did, I was constantly out of breath. I even found myself sleeping in the middle of the day—something I never had time for with my busy work schedule. I remember that when I told my physician, she scheduled an appointment for me to see a nutritionist as we both agreed I was not eating right and that I was now borderline diabetic. But even after the change in my diet, I still felt tired. So, now this diagnosis made sense, and I was encouraged to start chemotherapy.

The first month of chemo was really a breeze! If this is what it feels like—no nausea, no fatigue…really no side effects other than losing my hair—this isn’t bad. But by the second treatment, it was a different story. My white blood cells had dropped significantly to the point my chemotherapy was delayed by a week while we worked to boost them. It was at my second chemotherapy session that I started to feel like the wind was being knocked out of me! I always tried to show a cheery disposition, as if chemotherapy, and then radiation therapy, wasn’t kicking my butt! I wanted to be seen as a good patient: one who did not complain. I was terrified of being seen as “difficult.” That all changed when one day, while I was on my way to my radiation appointment, I could barely get out of the car.

I stumbled into Mount Sinai West hospital to check in, trying just to make it to the bathroom to center myself before my appointment. But as I tried to find my ID to show security, I could feel myself getting weaker. I told myself, “I’m almost there, I just need to get on the elevator and sit for a minute,” but when I barely touched the elevator button, I blacked out and crumbled to the ground.

I was taken to the emergency department, where I was put on a gurney and given an IV. I was later admitted to the hospital for more than a week, where I was prodded, endured two blood transfusions, and had two platelet transfusions as well.

Talking to my team of concerned doctors, nurses, and nurse practitioners, I told them that I thought I was making their jobs easier by not telling them how tired I was feeling—that I was barely able to make it out of my bed before collapsing in exhaustion. I was afraid they would discontinue my chemotherapy and radiation treatments. I was already 21 days into a 27-day radiation regimen. I wanted to make it to day 27. I wanted to be consistent and show up.

What I have since learned is that a good patient is not one who is quiet, but one who speaks up and informs their medical team of any difficulty they are having. Despite the fact that I was surrounded by educated professionals, doctors, nurses, and nurse practitioners, I was the expert when it came to my body. In order for any treatment to be as effective as possible, I had to be honest about how I was feeling. I also have learned that I know my own body. When something doesn’t feel right, I will now be spreading that message to my community. And, as a community advocate, I urge you to ask for a cancer screening if you feel something is wrong with your body. Do not wait for a doctor to recommend it. We all must take agency of our personal health care in order to maximize our quality of life and the gifts we have to share with this world.

Kiara St. James has been a community organizer and public speaker for over 20 years. She has been instrumental in changing discriminatory shelter policies that affected the transgender community and has presented workshops concerning marginalized communities at the International AIDS Conference in Vienna, Austria, and the United Nations, as well as many other conferences and academic institutions. 

Kiara is the founder and current executive director of the New York Transgender Advocacy Group; she was instrumental in the passage of GENDA in 2019.