Mimi: Being A Lesbian With Breast Cancer

In 2006, while in my 20s, I was diagnosed with breast cancer. As many people know first-hand, a cancer diagnosis changes your life overnight. I went from being, I thought, a healthy young singer-actress with a day job, to being a full-time medical patient who still had to hold onto that day job for dear life because I needed the money and health insurance. And, once again, the difficulty of being a lesbian in a heterosexual world reared its ugly head. Some people question whether being a young lesbian is all that different, in the cancer setting, from being a young straight woman. I say, it isn't and it is. On one hand, young women of any sexual identity going through breast cancer face many of the same difficulties. Many of us lose body parts which, to society, define the female gender: our breasts and sometimes our ovaries. Some of us are thrust into early, draconian menopause. Many worry that our options for having or adopting children have been drastically reduced. Many struggle with the decimation of our short-life savings.

But there are differences. The forms I filled out in most doctors' offices had no category for me when asking about marital status, which made me feel isolated, and had no questions at all about sexual and gender identification. I have had to deal with coming out, time and again, to doctors, nurses and medical personnel; to explain that my female "girlfriend" is my partner, and thus a prime member of my support system, not just a friend who happens to be female. Any discussion of the side effects of treatment on fertility and sexuality has begun with the assumption that I am having sex with men.

Normally, correcting people doesn't faze me. Added to a new cancer diagnosis, everything fazed me. Coming out to a doctor requires an extra step that heterosexuals don't have to take, and this step requires extra energy. As anyone who's been through the horrors of cancer diagnosis and treatment knows, any extra expenditure of energy can be the tipping point between hanging in there and plummeting off a metaphorical cliff.

In addition, when coming out to a medical professional even in the seen-it-all city of New York, there is the worry that I may receive substandard care, that my partner may be barred from visiting me in the hospital, or, most likely, that I may receive care that does not adequately address my different circumstances as a woman partnered with a woman.

For example, one day, years after my diagnosis, my oncologist told me out of the blue to "be careful," meaning to use contraception so as not to get pregnant while on Tamoxifen. I corrected her, but I was horrified that she had been treating me for three years and yet knew nothing about my sexuality, and, when I came out to her, had no reaction other than to make a note in my file.

I suppose, in retrospect, that in those blurry early days I never mentioned to my oncologist that I am a lesbian. But the onus should not have been on me. I should not have had to expend extra energy to correct a widespread assumption that I was heterosexual. The way I identify my sexuality and gender, and the gender of my partner(s), is extremely relevant to my treatment and long-term survivorship. When medical personnel or layperson supporters automatically assume that patients are heterosexual or have conventional gender identities, then they are not, for example, likely to discuss increased cancer risk among lesbians, or the need for ovarian health awareness among both lesbians and those who identify as Female-to-Male transgender, or the potential toll on emotional health that adding another layer of difference in gender or sexuality can take on a cancer patient. And they risk alienating patients and discouraging them from sharing information that would aid them in providing the best care possible.

Culturally competent medical care and support for LGBT cancer patients needs to start with the elimination of assumptions about sexuality and gender, and the inclusion of language, on intake forms and in conversation, that signals to patients that being LGB and/or T is an accepted and embraced possibility, from the beginning.

Author

MIMI F.

Mimi has worked as a consulting LGBT Outreach Coordinator for SHARE. She is also a singer/songwriter/actress and yoga teacher in NYC.


22 Comments

  1. Sarah Jenny

    Thank you for being so brave and telling your story. I think this is a really important read for those dealing with/survivors of cancer, their partners, families, friends, as well as those working within the medical system.

  2. I think the line… "but I was horrified that she had been treating me for three years and yet knew nothing about my sexuality, and, when I came out to her, had no reaction other than to make a note in my file" is the one that jars me the most. Three years of a "relationship" with a caregiver during a ridiculously traumatic period in someone's life and sharing a personal detail, as Mimi said, only resulted in a note in her file?

    Change and awareness at a much greater speed than we are moving at right now is necessary. Ignorance does nothing for our society except slow down the many, many processes and day to day situations that need to be changed and improved so that everyone can get and equal share of the help and respect that is deserved and way overdue.

  3. This is an extremely important issue that needs more attention. Mimi accurately captures the many layers encountered when facing breast cancer as a young lesbian woman. I wish all healthcare professionals would read this.

  4. Great story. Should be required reading for those in the healthcare field.

  5. Athena Reich

    Very articulate and poignant. You make an excellent case and I hope this article helps to make change in the medical system. Thank you for sharing your story.

  6. I think your commentary is spot-on, Mimi. I haven't been a cancer patient, but I'm a lesbian and I've had 4 surgical breast biopsies. I've had to have procedures and see doctors in a variety of contexts where my sexuality was assumed heterosexual and it absolutely impacted my care. Before my last breast biopsy, I used the bathroom before they were able to take a urine sample, and when they asked me, I couldn't go. The only reason they wanted the sample was to ensure I wasn't pregnant. I kept telling the resident I was NOT pregnant and had no chance of pregnancy, but they failed to believe me and were going to delay the surgery until I could urinate again until I FINALLY had to come out to them as gay so they could get it through their heads that I was NOT having sex with a man and could NOT be pregnant. The resident went and told my surgeon, who came to see me before the procedure and apologized, but I was pretty embarrassed to be sitting there in a gown, minutes from going under anesthesia, and having to argue and out myself. I was mortified knowing that everyone was going to be staring at my breasts in the next few minutes as I was knocked out, presumably fixated on my sexuality and maybe not as fully focused on the task at hand. I completely agree about the need for the inclusion of questions on forms and language in conversation in the medical community that makes no assumptions and is entirely inclusive of those in the LGBT community. Well said, and thank you.

  7. This is a very eye-opening post, and you should be proud of yourself for speaking up! I'm actually studying sexuality and aging, and although you are clearly far away from becoming a senior, I have found there is a giant gap in health information for sexually active LGBT seniors (sex is still somewhat a taboo topic when it comes to people over 60). Do you or anyone else have any thoughts on how this would be for the elderly if they were in a situation like yours, considering they had gone through a mastectomy and have a same-sex partner?

  8. Mimi,

    Thank you for your posting. Knowing a patient's sexuality is essential to understanding the client's support network and potential medical risks.

    The coming out process in a period of medical need can be difficult, in that one can ask themselves, "Am I being judged?", and a worst paranoia "Does this affect the doctor's intentions for providing me with good care?"

    While America has come so far, we have a long way to go in building a social infrastructure to support LGBT patients.

    As a resident overseas and in a Muslim country. Patients are asked about their religion and marital status. As a gay patient it is always interesting how both domestically and abroad I have to break the ice regarding a medical question.

    And what is worse is how certain doctors lack the vocabulary to discuss LGBT sexual relationships.

    Thank you for your posting.

  9. At a time when one's survival is being threatened, a woman shouldn't also be forced to either educate health care professionals or hide who she is. The word needs to get out and Mimi's article is an excellent start.

  10. Thank you, Mimi… This commentary should definitely be read by health care professionals, and by the public at large…

  11. Mimi, your story is enlightening, honest, and extremely well written. Thank you for sharing it. This should be required reading for health care professionals.

  12. Excellent commentary Mimi.

  13. I think this is a great article that is very eye opening. I think those in the medical industry should take note. I feel that medical forms in particular would be a great place to start at making this kind of important change.

  14. Well said!

  15. I think that Mimi has an excellent point that the standard medical forms need to be updated to be more inclusive and reflect the lifestyle of all cancer patients. That's a crucial part of a strong support network and needs to be acknowledged.

  16. I appreciate this post. I ran a webinar on LBGT issues for AVON's Breast Health grantees in 2009 explaining to them that they need to ASK. As you so eloquently describe, it makes everyone feel included.

    My organization posted information about ways to make intake forms more appropriate and inclusive. We have a large section on LBGT cancer issues.

    I note that after a double mastectomy, more than one young woman doing patient info intake (without looking at me) asked me when my last mammogram was. My consistent response is – please look at me for a moment. Some of them respond with anger at my not answering THEIR question, some are embarrased when they do eventually look up. Others, who knows if it even registers – do they know why they are asking about my latest mammo?

    Founder http://www.annieappleseedproject.org

  17. All people who work in health care, or any institution in which they have to deal with people for that matter, should be required to read this eye-opening account of the ways in which the assumption of heterosexuality as "normal" affects the treatment and well-being of those for whom it is not. We need to make sure that no one feels that they fall outside of our care and consideration.

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