By Tara Baysol
My first truly extensive exposure to the health care system as a patient began in 2013 with my brain cancer diagnosis. It was, and continues to be, an eye-opening experience.
One big challenge that presented itself early on in my cancer journey was learning how to navigate the system and advocate for myself – not only as a patient, but also as a lesbian. Until this point, my wife and I had the privilege of “closeting” ourselves in environments we suspected to be prejudiced or unsafe. And while my cancer journey was the first time that our marriage brought both legally recognized rights and protections, I found myself exposed to instances of intolerance in the earlier days of my treatment.
My wife Allie and I have an incredible amount of love for one another. We compliment each other’s strengths and nurture each other’s self-growth. We also advocate for each other’s needs. This became especially evident when I began experiencing symptoms that ultimately led to my diagnosis.
My symptoms became concerning shortly after we moved to Connecticut in August 2013. Aware of my tendency to procrastinate when it came to medical care, Allie scheduled a doctor’s appointment on my behalf. Unfortunately, before we got one foot in the door of our new town’s health center, the nurse over the phone became very short with Allie upon hearing that she was calling on behalf of her wife. The interaction was so unnerving that we submitted formal feedback to the facility.
We continued to face unique challenges as a result of our partnership. Once doctors found the lesion in my right frontal lobe, I began seeing more specialists – and anticipating awkward introductions. Instead of allowing us to identify ourselves as patient and spouse, providers would try to guess the nature of our relationship. “And are you a friend or sister?” some would ask. With every new medical appointment and phone call, we came to dread the inevitable “coming out” process.
A few days before my brain surgery, I thought I might benefit from talking with someone in mental health services to help me process what I was experiencing. The specialist at the student center where I received care ended up ignoring the title and pronouns I used to describe my wife. After introducing myself as female, as well as clearly and continually referring to Allie as my “wife” and “she”, the therapist would respond with “husband” and “he” as if I had somehow misspoken.
I concluded this woman was not the person I wanted to spend what I was thinking could be my last few days of life with mulling over my life’s purpose. She might be the person to talk to about death and dying, but the fact that she didn’t have a palette of awareness that could handle diversity was offensive to me.
The culmination of my personal experiences, coupled with the complexity of my rare cancer diagnosis, led us to come to Dana-Farber. Our experience here has been one of great relief and extraordinary hope. Allie and I feel supported, welcomed, and treated with dignity and compassion.
This is what all LGBTQ patients deserve: to feel reassured that our relationships are not only respected, but also deeply supported and identified as valuable resources for us as we learn to live with cancer. In any hospital or health care center, a commitment to inclusion and diversity goes beyond “bragging rights” – it is an essential part of ensuring quality medical care and access. When people feel alienated or disrespected during health care encounters, they are less likely to seek, advocate, and follow through on care.
There is a lot of work to be done before we achieve full equality. But my team at Dana-Farber gives me hope that all LGBTQ cancer patients can receive the kind of care that I have today.
Read more about Tara’s experience discussing death and dying with her loved ones.