Everyone Deserves Quality Health Care: On Writing “Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person”

Josh_blog photoWriter and Web Content Coordinator Josh Fernandez writes about authoring Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person, and why creating this resource was important to him and LBBC.

I came out to my primary care doctor when I was 16 years old.

I had come out to a few close friends in the weeks before, and they didn’t handle it well. After that, my anxiety gradually increased. I had been meaning to make a doctor’s appointment for other reasons, so this anxiety pushed me to schedule a visit.

There were words before and after “I’m gay,” but I couldn’t help but focus on those two. After I said them, my stomach and chest felt as if they twisted into knots. My doctor’s face didn’t change; she maintained her relaxed facial expression and asked me questions about the anxiety I had. We then talked about what was going on. Before the end of the appointment, she told me not to hesitate to contact her if I had other questions or concerns, or if I needed someone to talk to.

My doctor was affirming, which was something I really needed at that time. That’s not always the case. Among the different barriers and disparities lesbian, gay, bisexual and transgender people face when seeking health care, getting quality care that’s sensitive is a major one. Forms in the doctor’s office or a hospital sometimes offer very limited ways to describe your relationship or gender identity. Providers may make assumptions. Biases may directly or indirectly impact a provider’s approach to care.

This is why it was important to me to write Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person for Living Beyond Breast Cancer. There are advocacy organizations and other institutions working hard to educate, inform and train healthcare professionals on adequate care for LGBT people. Things are improving – just look at the Healthcare Equality Index – but there is still much work to be done. LGBT people with breast cancer cannot afford to wait for this work to be finished before receiving care. I wanted to create a resource that could empower and help LGBT people while that systemic work continues. I also wanted this publication and related online content to include personal stories of LGBT people affected by breast cancer, so that readers know they’re not alone.

At first, it was a challenge finding LGBT people open to share their experiences. But after we did, I interviewed five inspiring people and I heard about experiences good and bad, heartbreaking and inspiring. These stories confirmed for me that we at LBBC were creating a needed resource.

The box of the printed brochures made its way to our office late last year. It felt validating to see the statement “Everyone deserves quality health care” printed across the first two pages of the guide. And I was proud that “LGBT” is now under the audience list on our homepage, linking to additional Web content on breast cancer and LGBT people.

Over the weeks, as I’ve spoken with colleagues about the brochure, I realized that I only came out to two of the five people I interviewed. I don’t believe I disclosed my orientation with the reviewers, either. When I did, it was in the context of a comment or question I had, or a story I shared. I was so eager to hear these participants’ personal stories about breast cancer care that I never thought to share my sexual orientation with each one of them, or tell them why this project was so important to me.

Coming out doesn’t happen just once. Because we live in a society where most people assume everyone is straight, coming out it is also a life-long process.

That is one lesson I learned from my own experience of coming out to my doctor, and that I held with me as I wrote the brochure—that I would need to come out again and again over my life. With a breast cancer diagnosis, you’re likely to be in treatment for 8 months to a year, followed by scans and appointments for survivorship care. And if you have metastatic breast cancer, you’re likely in regular contact with your care team for the rest of your life. Different healthcare providers make up a breast cancer care team. Multiple people will be involved your treatment, reviewing your options and helping you treat or manage the physical and emotional side effects of this disease.

It’s not unreasonable to want your care team to respect your needs and offer you sensitive care. My hope is that this Breast Cancer inFocus brochure can help you figure out how to find and communicate with providers who will do just that.

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