Having My Preventative Double Mastectomy Forced Me to Face My Struggle With Bulimia

Trigger warning: This piece includes mention of disordered eating, particularly pertaining to bulimia. This is one writer’s experience.

I feel like a fraud sometimes, as if I’m not thin enough or sick enough to label myself as someone who has an eating disorder. Yet the fact remains that I have bulimia, and the years I’ve spent hiding in restrooms after eating something I’ve deemed a ‘no-no food’ is enough evidence to confirm this disheartening reality.

Though there may be other roots and causes, I believe that my eating disorder stems from my lack of a positive self-image. I can’t remember a time that I was satisfied with my body, but even so, it never occurred to me that I should seek help. My bulimia was my secret, and I intended to keep it that way. That was until I had a prophylactic double mastectomy.

The Tough Decision to Get a Double Mastectomy

Let's back up for a minute. I tested positive for a BRCA1 genetic mutation in January 2018. Kathie-Ann Joseph, the Chief of Breast Surgery at Bellevue Hospital, tells me that the BRCA gene encodes for proteins that aid in DNA repair.

Everyone has the gene; however, only one of every 400 people in the U.S. has the BRCA1 or BRCA2 gene mutation — including me. “When there is a mutation in this gene, this leads to an increased risk of breast cancer because damaged DNA is not repaired properly,” Joseph explains.

Though most people have a 0.25 percent chance of having the BRCA1 or BRCA2 gene mutation, due to genetic factors from my dad’s side of the family, my chances were much higher. In fact, my chances of having the mutation were 50 percent. My dad tested positive for it after his sister prompted him to meet with a genetic counselor; she had beaten breast cancer several times and their mother died because of it.

After testing positive for the BRCA1 mutation, I talked about my options with my doctors and learned that having a prophylactic double mastectomy would make my lifetime risk of ever getting breast cancer go from over 80 percent to less than one percent. Shortly after, I scheduled the surgery.

As eager as I was to have the procedure, I wasn’t coping well with the idea of losing my breasts. The days leading up to the surgery were filled with sporadic fits of crying followed by sleepless nights. No matter what I did, the image of my breast tissue being carved from my cleavage lingered like a recurring nightmare.

I experienced more bad days than good, and I could not stop myself from worrying about the potential after-effects of the invasive surgery. As much as I already struggled to like my body, I worried that this self-loathing would be impossible to overcome after my double mastectomy. I realized that I could no longer be the sole listener to my own hostile musings anymore, so I began to see a therapist.

Acknowledging My Bulimia

Initially, I felt as though I needed to prove to my therapist how confident and “normal” I actually was. I wanted to convey that I certainly didn't need to be there — that I was only going to therapy because someone was going to cut my breasts off at the age of 25, which was making me extremely unhappy. I tried to convince myself of those things each time I entered that room.

I'm not the only one who has found it beneficial to see a therapist before undergoing such a drastic procedure. When I ask Sharon Bober, senior psychologist and director at the Dana-Farber Cancer Institute Sexual Health Program, about the utility of therapy for patients undergoing a preventative surgery, she says she’s a strong proponent of it.

Bober, who is also an assistant professor in psychiatry at Harvard Medical School, tells me, “Sometimes it’s important to allow yourself to take in feedback from someone else and get out of your own head. Often when we can also see ourselves through someone else’s eyes, we can gain a different and often helpful perspective.”

My therapy sessions started off as conversations about my breasts — how I felt about losing them, my confidence (or lack thereof), and other chest-related chat. All the while, though, something else was weighing on me. I knew that I needed to disclose my purging to make the most out of our sessions. Eventually, I confided in my therapist, and through our conversations, I realized how much my bulimia had affected my life. I was struck hard by this realization.

Though my intention when I first stepped foot in my therapist’s office was to address the loss of my breasts, my sessions slowly brought my eating disorder into sharper focus. I saw that each time I purged, it was an attempt to free myself of the hateful thoughts that flooded my brain after a meal. After my BRCA1 mutation diagnosis, I used my bulimia as a reminder that while I may not be able to control what was about to happen to my breasts, I could control something, even if in doing so I was also damaging myself. While purging, I was the one doing the destruction; not a genetic mutation, not a surgeon — just me.

Healing My Body, Healing Myself

Then, I had my double mastectomy. I woke up after the six-hour ordeal with new silicone implants where my breasts used to be. Although I was incredibly grateful that the surgery had gone well, I feared for my psyche now more than ever. I worried about potential consequences — would I lose even more of my confidence?

Prior to surgery, most of my body went unloved and unappreciated. My breasts were one of the only aspects of my body I didn’t hate. I prized each of their curves and loved how soft they always were. I admired how they were a perfect combination of flesh and fat that fit nicely into the palm of a hand.

After the double mastectomy, I was caught in a dangerous whirlwind of self-loathing. My confidence was at an all-time low, and my desire to live a happy, healthy life tormented me like phantom pains in my new breasts — so I continued to see my therapist for support.

I ask Joseph about the physical and emotional toll a preventative mastectomy can have on a person and she explains that both are difficult. However, she believes that we often don’t pay enough attention to the emotional aspect in particular. “Some patients need support, whether it’s speaking to a psychologist or joining a support group with other high-risk patients,” she tells me.

As much as I resisted it at times, I was forced to face my demons head-on because of my double mastectomy. If I didn’t have the surgery, I may have never gotten help or told anyone about my eating disorder. Those unknowns are terrifying.

While it’s been hard to reconcile with my new body and come to terms with my eating disorder, the mastectomy did provide me with some consolation. Apparently, that’s not uncommon. “I will say that for many mutation carriers who have seen family members die from breast cancer, having the mastectomy can also be a relief,” Joseph says. “They are tired of coming in for imaging, biopsies, and more. Everyone is different.”

While my struggle with body image is far from finished, I will likely never have to fight this disease as my family members did. Instead, I can now focus on overcoming my negative body image and learn that my worth does not lie in my chest alone, as Bober says.

“The experience of body image satisfaction can be promoted by a broader feeling of physical health and well-being,” Bober said. “I would invite any woman to consider that the experience of feeling whole or feeling strong in our body is not tied [to] or dependent on any one body part.”

These days, I’m doing everything I can to learn to be kind to myself and to love myself enough to enjoy life. I am trying to appreciate my body as it is and ignore the voice in my head that screams that it’ll never be good enough. That voice is slowly getting easier to drown out, and I am grateful to my body for getting me where it is today, regardless of the damage I’ve inflicted to it in the past.

If you suffer from an eating disorder and would like to speak to a professional, you can contact the National Eating Disorders Association hotline at 800-931-2237 or online using Click-to-Chat. The NEDA Helpline is available Monday to Thursday from 9 a.m. to 9 p.m. ET and Friday from 9 a.m. to 5 p.m. ET.

Read more about eating disorders:

• What I Wish My Doctor Understood About My Eating Disorder

• How My Mother’s Death Set Me on the Path to Eating Disorder Recovery

• Here's How I Realized I Have Body Dysmorphic Disorder

Now, watch one survivor's story of feeling sexy without nipples:

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