Where Do Nonbinary People with Breast Cancer Find Support?

Q: I'm nonbinary. I use they/them pronouns and consider myself transmasculine, although I don't have any interest in hormones or surgery. Well, lucky me, I may end up getting top surgery anyway, because I also have breast cancer.

The experience has been very alienating. Everything about it, from treatment itself to support groups to the gift shop at the hospital, is obviously meant for cis women, especially straight and traditionally feminine ones.

I have supportive people in my life, but I wonder if I need to connect with other survivors, too. While the support groups I've been encouraged to go to all seem to be full of nice people, I worry it's just because they see me as a woman, too. (There's also a support group for men with breast cancer, but I'm not a man with breast cancer, either.)

Honestly, the people in my trans and nonbinary support groups on Facebook, and the trans folk I know locally, have been much more helpful as I go through this, even though none of them have had breast cancer. Is there anything I can do to feel more supported?

Everyone keeps talking about how the one remotely positive thing about having breast cancer is the survivor community, but that just doesn't feel like something I get to have.

A: Hey there. I want to first of all validate how extra difficult and unfair this is. Advocating for yourself as a nonbinary person is always hard work. It's especially hard (and unfair) when you're doing so while going through cancer treatment!

I could go on a whole rant about the sexualization and gender essentialism that's shaped breast cancer advocacy and support for decades, but none of that helps you right now. I just want to acknowledge it's there, and there are starting to be more and more survivors, co-survivors, advocates, researchers, and medical providers who are aware of this and pushing back against it.

I think there are two pieces to your question, and they're somewhat separate: one, how to navigate treatment as a nonbinary person; and two, how to seek support as a nonbinary survivor.

Let's talk about the first question. You mentioned lots of supportive folks in your life. This is really important and helpful when it comes to navigating treatment. Does anyone accompany you to appointments and treatment? If not, could you recruit some friends or partners to come with you? Ask them to speak up for you and back you up as you set some boundaries with your providers.

Make a list of things your providers need to know to refer to you correctly. This could include the name you go by, your pronouns, your gender, the words you use for any parts of your body that might trigger dysphoria, how you want to be referred to besides your name and pronouns (i.e., person, human, patient, etc.), and anything else that might help you feel affirmed and respected.

There's no reason why a doctor, introducing you to their assistant, can't say something like, 'This is [your name], a 30-year-old person with an invasive ductal carcinoma on the left side of their chest.'

Once you have your list, share it with any receptionists, nurses, PCAs, doctors, or other staff you interact with. Receptionists and nurses may even be able to add notes to your medical chart to make sure other providers see and use your correct name and pronouns.

Your support people will be able to follow up and correct anyone who misgenders you or otherwise misses the memo.

Of course, not everyone is comfortable setting these kinds of boundaries with healthcare providers, especially when you're fighting a life-threatening illness. If you don't feel up to it, that's completely valid. And it doesn't make it your fault that you're being misgendered or referred to in ways that don't work for you.

It's not your job to educate medical professionals. It's their job to ask. If they don't, and you have the emotional capacity to correct them, that could be a really helpful and ultimately empowering step for you. But if you don't, try not to blame yourself. You're just trying to get through this as best you can.

Which brings me to the second part of your question: seeking support as a nonbinary survivor.

You mentioned the trans/nonbinary people you know locally and online are really supportive, but they're not survivors (or, at least, they're not survivors of the same cancer you have). What kind of support are you looking for that you might need from breast cancer survivors specifically?

I just ask because, while cancer support groups can be really helpful, they're not right or necessary for everyone. I think a lot of us end up feeling like we 'should' go to a support group during treatment because it's the 'thing to do.' But it's possible that the social and emotional support needs you have are already being met by your friends, partners, and trans/nonbinary groups.

Given that you've found these folks more helpful than the other cancer survivors you've met, maybe there isn't actually a cancer support group-shaped hole in your life.

And if that's the case, it kind of makes sense. While I was in treatment, I was often stunned by how much I had in common with people who had gone through all kinds of completely noncancer things: concussions, pregnancy, loss of a loved one, invisible illness, ADHD, autism, Lyme disease, lupus, fibromyalgia, severe depression, menopause, and even gender dysphoria and gender-affirming surgery.

One of the things causing you the most pain right now is cissexism, and that's an experience that everyone in any trans group is going to resonate with. No wonder you feel more supported there.

If you do want to find some resources more specific to trans or nonbinary cancer survivors, though, I recommend taking a look at the National LGBT Cancer Network.

I dearly wish there were more out there for you. I hope you're able to carve out the space you need for yourself.

No matter what, though, I see you.

Just as your gender isn't determined by the body parts you were born with, it's not determined by which of those body parts cancer happens to strike.

Yours in tenacity,

Miri

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Miri Mogilevsky is a writer, teacher, and practicing therapist in Columbus, Ohio. They hold a BA in psychology from Northwestern University and a master's in social work from Columbia University. They were diagnosed with stage 2a breast cancer in October 2017 and completed treatment in spring 2018. Miri owns about 25 different wigs from their chemo days and enjoys deploying them strategically. Besides cancer, they also write about mental health, queer identity, safer sex and consent, and gardening.