If you were to ask any person about their relationship or thoughts about breast cancer, they would probably inform you about their stories, whether it was their own, via a family member or a friend, or something they probably read online. The connected branches are more common than we’d like to admit, but with over 200,000 people being diagnosed with breast cancer just in the U.S. alone every year, it’s a topic that deeply impacts millions of people across the world.

Breast cancer doesn’t just affect women, though, it can affect the lives of men and genderqueer/non-binary/trans individuals. While media portrays pink ribbons and focuses on the lives of cis women that have been diagnosed with this unfortunate situation, it’s imperative to make sure that we shine a light on those who are also a part of the over 200,000 people. Thankfully, there’s a non-binary femme who is beginning this conversation through her platform and voice by sharing her own personal journey with breast cancer.

Ericka Hart is an advocate for providing the voices of all individuals across the globe by highlighting their stories and affirming for all body types. Hart’s passion for sexual education and expression was implanted in her soul long before her own personal experience with breast cancer became part of her narrative. While her breast cancer diagnosis might’ve infiltrated her body, her perspective on the world and what society and the doctors were telling her how she should or shouldn’t feel was not affected and instead, gave her the strength to push through and share her stories via numerous publications such as Refinery29, VICELAND, Buzzfeed and the Huffington Post. Through this process, she learned that even though society is telling you one way to feel about your body — if and when you go through an unfortunate situation like breast cancer — doesn’t mean that you should or that it’s right, whether you’re a woman, man, or trans/genderqueer/non-binary individual. You should love your body no matter what is happening to it, because it’s your body to love.

Whether you know someone who has been diagnosed with breast cancer or if you’re personally going through it as well, please scroll below to read Hart’s experience about how she went through it, what she learned through the process and how she plans to educate others about sexual health and identity.

Your story has been so profound. However, everyone might not have heard it yet. Would you mind briefly sharing your journey with breast cancer from the beginning to now?

I was diagnosed with bilateral breast cancer when I was 28 years old. Contrary to popular belief, it’s not a very young age to be diagnosed with breast cancer. The age assigned to breast cancer diagnoses are arbitrary and do not consider family history. Hopefully, we will see this number updated very soon, as there are many people who are diagnosed under 30 with all types of cancer, including breasts.

I found out in May 2014 while sitting in Wall Street. Good thing in NYC no one cares what sort of emotion you are having as I had what felt like an endless meltdown in the middle of corporate greed. I burst into tears and literally no one asked me what was wrong, much to my relief.

In most breast cancer articles, they mostly discuss key signs that could indicate breast cancer. Can you explain when you knew it was time to go to the doctor to get your breast checked?

I did a self-exam in the shower (which is one of the best places to do it because it’s slippery, allowing you to better feel the surface of your breast or chest rather than the deep tissue). I’ve been doing self-exams since I was 13 and this is a way to know your body so in the instance of something feeling peculiar, you can take action. One day, during a routine self-exam I felt a lump in my right breast and immediately went to see a friend of mine, who happens to be a breast cancer surgeon.

https://www.instagram.com/p/BonVn2VATCJ/?taken-by=ihartericka

After getting a mammogram or a sonogram and receiving a phone call from the doctor about the news is what most women fear but a lot, unfortunately, experience. As someone who has gone through that, what do you feel you were mentally going through during this time as you heard the news and afterward?

So, anyone with breast tissue, any gender can have breast cancer, not just cisgender women. The stigma that surrounds BC is that it’s a death sentence and there isn’t a neutral or positive outlook on BC so my feelings after the results are consistent with how I’ve been taught to feel about BC—despondent, hopeless, as if something was wrong with me rather than having the space to relate to it in a way not informed by the predominant ableism of our society.

How long was your process battling bilateral breast cancer? And what were some things you didn’t know about the system and the experience that you learned while going through this?

A year and a half. I learned that even a medical institution doesn’t care about my body. So my gender as a non-binary femme, my queerness, my blackness were all overlooked or pushed away or completely ignored. I thought that these institutions were safer spacers where I wouldn’t encounter racism, homophobia, misogynoir and I was surprisingly mistaken.

https://www.instagram.com/p/BmUCBAOgqlg/?taken-by=ihartericka

As a non-binary femme of color, hair can mean so many things and is part of one’s identity. What was the experience like when you lost your hair and did it take a while to adjust to this? 

Losing my hair was the hardest part of this experience. I had shoulder length dreadlocks at the time of my diagnosis and I had to cut them so I didn’t have them falling out all over the place as a side effect of chemo which would have been, I think, more devastating than cutting them off all at once. I also didn’t realize that I would lose all of my hair including body hair, eyebrows, pit hair, etc. It was funny losing my pubes, though!

When it comes to sexual health, there’s not a lot of talk about how an experience like this can affect a women’s sexual health, identity and perspective on herself as a sexual woman or non-binary femme during these times. Can you touch a little on this on how this was for you and also any advice you could give to someone who may be going through this and not feeling their best sexually or connect with their body?

It was hard for me because doctors weren’t talking to me about sex, so I thought that my decreased libido and lack of vaginal fluid were personal changes not a symptom or side effect of chemo. The advice I would give to anyone experiencing this: be kind to yourself—there are lots of different changes the body goes through during chemo and other cancer treatments, redefine and explore for yourself new ways to be sensual and intimate that feel good and affirming for your body. And use lots of lube!!

When someone has breast cancer, there usually are a few options as to what they can do with their breast afterward. While some choose to not get implants, others do. However, you decided to get implants without keeping nipples. How did you decide this and how has this impacted perspective and connection with your body as a non-binary femme?

I find this question to be interesting on several fronts. I think the societal assumption is that having a double mastectomy would make my body somehow abnormal and thus warrant a change in my relationship to it or that not having nipples must have signaled a descent into shame or discomfort around my body image. People generally don’t ask this question of able-bodied individuals or people not living with a chronic illness, which indicates to me how little conversation folks are having about bodies, how different they all are for each person and how they change given a number of circumstances. But, my relationship with my body hasn’t changed. I have a larger platform to share with people my body. To place myself in a narrative, where I would otherwise be discarded. As I have aged, I have gained more access to the ways in which to describe how I have navigated the world in this body. But, there has been no internal change, I’d argue the physical now matches the internal. I didn’t go from having nipples and loving it, to now having my breasts removed and hating it, as is widely held by the larger society (see ableism, white supremacist notions of beauty).

Also, as a sexuality educator, what are some things you wish people would learn more about when it comes to breast health. How has your experience influenced you to help others learn more about this and be educated?

Everybody that has breast tissue, any gender, can get breast cancer. That racism and capitalism contribute to people’s deaths from breast cancer. The ways in which we talk about BC is a body image issue. My experience with BC has influenced my work as a sexuality educator in that it has my sex education become more affirming of all bodies considering that not all bodies function or exist in the same ways.

As someone who may be going through the beginning stages of this, what are some things you would recommend someone to do to help them prepare mentally, physically, socially, and beyond?

We shouldn’t be considered “more” voices. We shouldn’t be a diversity quota. We should not be an afterthought when research organizations conveniently remember that queer and POC and WOC people exist. The work isn’t for cancer survivors to do. The authoritative structures, the medical industry, donors, large non-profits who benefit from the perpetuation of this disease, they know what to do.

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Feature image via Ericka Hart’s Instagram