I grew up in the 90s, during the peak of “heroin chic” — a look based on the emaciated bodies of heroin addicts.
However, I grew up into a primarily indoor artsy teen. I always had an appetite and just never seemed to be able to lose that darn baby weight that kept me from looking “so pretty.” Needless to say, I struggled intensely with body image issues for the next decade and a half.
Over the course of my cancer treatment, I lost and gained noticeable amounts of weight. From there I was routinely asked, “How much weight did you lose?” I was told that I “look good now” and “chemo suits you.” Since 2014, I have shifted in and out of periods of disordered eating and have now finally landed in a healthy mental place with my body. But the comments go on. People are quite quick to fetishize superficial benefits; weight loss, the social perks of an easy parking space with a disability placard.
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As a whole, the American general public is still stuck in the 90s when it comes to appearance standards. This antiquated obsession with skeletal women routinely invades my space and I’m expected to embrace it, graciously. But I’ve learned that impact > intent, so I no longer care if you think you’re being nice.
What usually happens:
Them: “Oh, you’ve lost weight!”
Me: “OMG, thank you so much!”
This kept the conversation nice and easy. But the frequency at which this type of exchange happens has made it very apparent that my overweighted-ness was my defining feature to everyone as a youth, and I’m done. If you come at me with a personal comment on my body, I will come back with a highly personal reason and we can take bets to see how comfortable that makes you.
What happened this time:
Them: “Oh, you’ve lost weight!”
Me: “Yeah, I haven’t had an appetite for over a year. I’m talking with my doctors about it.”
This led immediately to the assumption that I was dying. I had to explain that no, I wasn’t dying. But likewise, I wasn’t perfectly healthy. And that’s okay.
I have since managed to move beyond basing my worth on my meat suits and I’d kindly ask that you respect that choice. Body shaming or praising comments are so beyond gross and upsetting to me now for so many reasons. I am at peace with my physical body for maybe the first time in my whole life but it takes daily effort.
What a bold assumption; silly me, thinking I could take on the Cerberus of misogyny, ableism, and fatphobia!
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The idea behind ‘heroin chic’ is a tale as old as time, unfortunately. In one form or another, disease and illness have been informing appearance trends for centuries, notably with tuberculosis shaping beauty and fashion.
Even today, illness and beauty and sexual appeal are so grossly entwined with one another that I don’t know where to start with it all. At the first MRI after being diagnosed, I was told by the technician, “Don’t worry, you’re too pretty for a brain tumor.” But then again, this is in line with all things within cis-hetero-patriarchy: a lady just can’t win.
While the socially desirable aspects of diseases are appealing to some, we’re deluded into thinking it’s appropriate to insist upon the beauty of illness. Yet, we also reject the notion that a beautiful person could ever become sick. Our ascription of worth, health, and decency to appearance is supremely fucked up.
And I see it constantly in the form of people consoling those with illness or suicidal ideations or just general painful times with confirmations of their beauty. “You’re beautiful!” “She was so beautiful.” “You’re too pretty for XYZ!” etc. I’m routinely told that I’m either the best looking sick person around or that I don’t look sick. To which I respond… “Thanks?” I need to start calling people in by asking, “What exactly do you think I should look like?”
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It’s amazing how much can change with a cancer diagnosis and how much stays the absolute fucking same.
All I wanted was a boyfriend in college. I pined and longed and took up too much mental space thinking about it. Cancer finally forced me into an adult mentality towards relationships, among other things. I finally escaped sexual desire and it has been fucking blissful not to want. But even now, the first time and the split second intimacy becomes even the slightest possibility again I revert to teenager mode. I guess I was surprised to learn and understand that cancer hadn’t altered that.
But, I also realized that after cancer, I have no problem at all letting a person know I’m attracted to them.
The first person I was interested in after my diagnosis, my therapist said that even if it doesn’t work out, he’s already given you gifts. He’s shown you that you can still have feelings for someone, that you can experience wanting someone like this. “He’s shown you that there are experiences to be had outside of cancer.” That was essential for me to hear as someone who had been single throughout my diagnosis and treatment.
As I was starting to entertain the thought of dating again, most of my body systems had settled into relative predictability. Enough of the chemicals that had coursed through my body during chemo had readjusted, so I could have feelings again.
I began the process and immediately encountered the problem I had read about in books: when to disclose, i.e. when to “come out” as having (had) cancer. Because so much of my post-diagnosis life involves cancer it’s been challenging even to have the first few words without massive lies by omission.
Tell me about yourself!
What do you do?
What’s your writing about?
What’s your art about?
Where do you live?
As a baby cancer diagnosee reading about this issue in 2014, I didn’t get it. I honestly thought it would be simple — just tell the person ASAP.
Now in 2019, as a slightly wiser cancer patient dipping her toe back in, I was beginning to understand the unique challenges. I’d gotten my share of mixed bag responses to people finding out I have cancer and so adding the romance element just ballooned the anxiety.
Do you tell someone during your first conversation? What medium is acceptable? Does it need to be done in person? On the first date? Second? Third? When things start to get serious?
I’ll never know if that’s the reason why after I told a guy on our first in-person date and he seemed cool about it, he promptly ghosted me.
With these forays into relationships with new people it’s just been impossible to tell how they will respond. Because cancer carries so much baggage in our society, telling a brand new person, whether you’re trying to forge a connection with them or not, is exhausting each and every time.
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Sex post-diagnosis seemed entirely monumental.
The only intimate physical touch I’d had for over two years was from healthcare professionals in gloved hands. I was building it up as almost a second virginity to lose (even after I’d finally broken that bullshit construct down in my mind). So, when I found myself on a date that was heating up, I had to excuse myself to go to the bathroom. The choice presented itself: did I want to have sex — casual sex at that — finally, after all this time?
Honestly, the state of the planet and climate catastrophes were a factor at that moment. I didn’t know when a long-term partner was going to come along and I didn’t want to die having never slept with someone again. This also happened to be the week after the deadly neo-Nazi rally in Charlottesville. I remember feeling distinctly grateful to be experiencing a human connection closer to love than hate. Make of that what you will.
Months later with a different partner I managed to experience an orgasm. My first by a fellow human. This happened only after my diagnosis. I connect these two things and credit my massive dive into self-discovery the last five years. It’s forced me to contemplate and connect to my feelings around self-worth in relation to relationships and pleasure. All of my sexual interactions post-cancer have been infinitely more balanced and consensual than they ever were before and for that I’m grateful.
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I’ve been forced to make a lot of difficult decisions in recent years. Most times, in an effort to save myself. When it came to my fertility vs. my life for instance, it was easy for me. But then, I was also asked to mourn that loss and hide my rage at the fact that my fertility had ever been prioritized over my humanity. That was just my experience though and my reaction to it as the person that I am. Still, decisions made by necessity will always carry a different weight than those made by choice.
As patients we are first and foremost people. And as whole beings we bring our unique histories, beliefs, goals, attitudes and priorities into exam rooms. I have yet to meet an illness that doesn’t in some way affect a patient’s sex life or intimate relationships. When we aren’t given the information or told how our bodies will be affected over time, it drives home the belief that we aren’t expected to exist after cancer, that sex is beyond the pale or some other dehumanizing, ableist assumption.
I have found there to be infinite interpersonal and sexual complications unique to the young adult cancer patient, beyond the topics of fertility or pity sex. I would love for us to do better in 2019 than the rest of history in assuming basic humanity of sick and or dying people. Because I have also found that as offensive ideas of sexiness because of sickness (your consumptive looks, your heroin chics), sexiness and sickness almost always come hand in hand.
Photos provided by Siobhan Hebron.