And Suddenly, Life

My tomato seedlings.

And just like that, it’s over. The surgeon said there’s no evidence of cancer remaining in my body, my hair is growing back, my new boobs are growing steadily until I decide they’re big enough, and I’m trying to grasp that thread of my life that I left dangling over half a year ago and tie it to the one I’m holding now.

As anyone who’s had cancer knows, you’re never really “done” with it. Even after successful treatment, there’s always the possibility of recurrence, the long-term consequences of chemo or radiation, and, in my case, a slew of reconstruction-related procedures and an oophorectomy in 8 years.

That said, now—when I’ve returned to work after my surgery—seems an appropriate moment for a post-mortem on the whole thing. (Sorry, poor choice of wording.)

For a brief window of time after my diagnosis I thought it would be my unraveling. I quickly realized that, instead, it would be my becoming. If a year ago I was in my intermediate Pokémon evolution, I’m now in what feels like my final one. (Don’t forget, though, that even fully evolved Pokémon continue getting stronger and learning new moves, and that eventually someone might “discover” mega-evolutions and I might change form again. I’ll leave it to you to decide which Pokémon I might be, before this analogy completely runs away from me.)

Before this I was essentially comfortable with who I was, with how I lived my life and conducted my relationships, with the career I had chosen, with the way I spent my time, and with that most fragile of things, my body. The illness transformed the way I saw all of these things, not in the sense that it made my views totally different, but in the sense that it strengthened, catalyzed, leavened, solidified them.

Any lingering doubts I had in myself or in the people who form my inner circle disappeared. Before, there was a part of me that really believed that when the time came to sit for the exam, the people around me would fail me, and more importantly, that I would fail myself, and that I would be alone in my darkest hour. But nobody failed.

Well, perhaps a few people failed. But their grades had been slipping for a long time, and some of them had really been failing already.

I no longer doubt that my friends and family will carry me forward when I can’t carry myself. But I also no longer worry that I’ll ever become completely unable to carry myself. I don’t struggle with imposter syndrome anymore, and I don’t worry that I’m not enough of an “adult.” What does that even mean for someone who has made the decision to carve up their body to save their own life? What does that mean for anyone, really?

What I keep coming back to every time I write about this strange episode of my life is simply how banal most of it was. It was so banal that I’m not sure I could even claim that I cried more, or was sadder or more scared, on average during this time than during any other period of my life. In fact, I will still say that the clinical depression I experienced from ages 19 to 22 was much worse and left me with so much fewer resources to help myself and seek support from others.

I would not repeat so much as a month of that experience for any price. The cancer, eh, fine, especially if we can do the surgery with proper pain management this time.

The point of that isn’t to pit depression and cancer against each other generally or adjudicate whether mental illness really is worse than medical illness or vice versa; it’s just to say, I already had unimaginably more strength than I thought I did. It just hadn’t been tested and proven yet.


After my surgery, which to me represented the culmination of most of my worst fears, people wanted to know if it was really “as bad” as I thought it would be. Of course, they wanted to hear that it wasn’t. Unfortunately, it was even worse than I thought it would be. It was worse than I had expected even at my most panicky moments. So this isn’t the story of how I overcame those phobias. It’s the story of how I learned that I can survive weeks of unrelenting pain, panic attacks, and suicidality and come out the other side essentially myself.

I’m comfortable saying that I’ve been traumatized by that experience. In dreams I wake up after surgery only to be told that something went wrong and it has to be done again, over and over. Most evenings, when I’m home from the life I’ve finally returned to, alone and in silence, an inexplicable sadness comes over me—so inexplicable that I know exactly what causes it.

It’s not that I “miss my old body,” though sometimes I do. What I feel goes much deeper than that. There are memories, images, that fill me with something I can only call grief—looking back at my parents as I was wheeled away to the OR; watching them cut up my food for me when I couldn’t; walking around on the deck of their house, back hunched, trying to explain to my mom a meditation exercise I was trying in which you breathe the pain in and then breathe it out; when my friends visited me at home two days after and I sat, again hunched, mostly unable to speak or even look at them; the first time I sat on the deck in good weather, no hat, and felt the sun on my skin again; and more, and more, and more.

All of this lives in me now, not compartmentalized or repressed but very much there, just beneath the surface. It ebbs and flows and sometimes retreats deeper and other times comes closer to my skin, where I can all but feel it with my fingers when I press them onto all the parts of me that no longer feel.

It hurts all the time, but it’s also, in its own way, completely normal and healthy. I now contain a lot more things than I did six months ago, and not all of them hurt.

Rather than feeling diminished by the experience, I feel expanded. Which is fortunate because it gives me enough room to contain all of the contradictions inherent to this process. My friends were probably hopelessly confused. One day I’d be crying about what an ugly scarred half-person I am; the next day I’d be marveling at how it feels to dance, to sit in the sunshine, to run my fingers over my healing incisions. One day I would say that my life has been standing still; the next I’d be talking about all I’ve learned, everyone I’ve met, everything I’ve planned.

And then there were the times, most of which I never found the words to explain to anyone, when I felt like I was experiencing something transcendent. I had feelings that felt completely outside of my normal existence and that I couldn’t have had any other way. I’m not a religious person, so I don’t think of it that way. Instead I think of them as moments when I felt the pulse of life. I felt how precious it was, how sacred. I felt overwhelming gratitude, both towards people who helped me in even the smallest ways and towards the universe itself. I felt like I could survive anything.

And then I’d go back to feeling like a broken old piece of crap nobody wants anymore.

Well, it may be confusing, but it’s also part of the experience of being ill—and, to a slightly lesser extent, of being human. I invite you to enter the contradiction with me and make yourself comfortable.


Besides work and spending time with friends, nowadays I’m often working on my garden. Last fall I decided I wanted to try growing fruits and vegetables in the spring, and I had all these ideas about buying all kinds of plants and building a structure to house the containers and starting seeds early indoors, and for obvious reasons that didn’t happen. So I started last week. It was probably slightly late to plant seeds, but it is what it is and it’ll be what it’ll be.

I’ve always loved plants, and always felt disproportionate grief when they sickened or died. Now it’s no different, except that I’m even more aware of the precariousness of life, of the journey seeds must undertake to become plants, and how perilous all of that is. Soil, water, warmth, light. And out springs something that nourishes.

I used to feel beautiful. Now I don’t, and it’s hard to fully imagine what that even felt like. But I think I’m finding my way back to it, slowly. In the meantime, I look around at my pots full of fresh soil and think, maybe I can still make something beautiful.

I understand how plants “work,” mostly, but the more fundamental part of my brain is still stunned every time a seed germinates. I’ve now planted everything I’m going to plant, and some of the seeds have sprouted–pulling themselves up through the soil, hunched over like I was right after surgery, slowly stretching themselves out to stand tall just like I did, and finally unfurling their first two leaves, just like the first time I felt well enough to bring my arms up and stretch them out from my sides as hard as I could, feeling them become a part of my body again.

I can never fully expect them to do it. Every time I’ve ever planted a seed I’ve thought, no way, there’s no way you can just stick these tiny hard things into the ground and a week later they turn into actual plants.

And yet, inevitably, they do.


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And Suddenly, Life
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The Freedom of Infertility

Before cancer, I wasn’t sure if I wanted to have kids. I knew that I had plenty of time to decide, and that I might start to feel strongly about having them at some point. But I was committed to not having them until I felt very strongly about having them, and I was also quite certain that I have no desire to experience pregnancy and childbirth. I find the mere thought of it revolting and horrifying.

Because of that, my thoughts about becoming a parent were always murky and difficult to bring into focus. I was obviously aware that adoption is a legitimate option even for people who are able to conceive and bring a pregnancy to term. But everyone I knew–and knew of–who had adopted children had done so because they couldn’t become pregnant or get someone pregnant, or because they couldn’t do so with the specific person they wanted to have the baby with.

I couldn’t imagine having to explain to dozens of nosy people why I had chosen to adopt, and face the disapproval of all the women who believe that pregnancy and childbirth is The Most Rewarding Thing You Can Do As A Woman and would look down on me for wanting to spare my body from it. When I’d shared my feelings about pregnancy and childbirth, I was usually told that if I wanted a baby badly enough, I’d be willing to do anything, even put myself through labor.

I understand now that a lot of that is post-hoc rationalization on their part. I have no doubt that if I actually had a child, I would do anything to preserve that child’s life, even go through pain and suffering like that. But since no child yet exists–the child is theoretical at this point–I’m not willing to sacrifice very much at all. Some people really do feel that way, but I can’t love someone who doesn’t exist yet.

For a long time, these were things I thought about pretty rarely, because they weren’t really relevant. I wasn’t in a place in my life to have a baby, and I had years to get to that place if I wanted to. None of my partners have wanted to have children while we’ve been together, so the conversation didn’t come up that way either.

Then, in an instant, everything changed, and I was sitting in an exam room in a gown and my oncologist was telling me that if I want to be able to conceive later, it would be a very good idea to freeze my eggs before starting chemo.

“Would it delay treatment?” I asked.

“Yes, by at least a few weeks.”

“Does that increase my risk of metastasis?”

“Any delay in treatment potentially increases your risk, though in this case it’s a small risk and many women choose to–”

“Then no.”

You know that scene in Doctor Strange when the Ancient One strands Stephen on top of Mount Everest to force him to learn how to use his nascent magical powers? That was me in that moment. The prospect of death can catalyze all kinds of learning and insight. In that moment, stranded on the mountain, I learned that I value “natural” childbearing so little that I was unwilling to accept even a very small, oncologist-sanctioned risk for it.

The doctor continued: “You seem like you know what’s right for you, but I am obligated to warn you that you might regret that decision later.”

I said: “I may feel sad about it later, yes. But I will never regret being alive to be sad about it.”

A few weeks later, I learned that even if I’m still able to conceive after my treatment, I shouldn’t. I have the BRCA mutation, which raises my lifetime risk of developing breast cancer to about 70% compared to 12% in the general population. For ovarian cancer, it’s 44% versus about 1%. Any child I conceive has a 50% chance of inheriting this shit.

When I brought this up with my doctor, he immediately told me that they can use IVF to select eggs that don’t have that gene and selectively implant those or whatever, but that sounds like 1) a massive fucking headache and 2) something that I definitely don’t get paid enough to be able to afford. In any case, I do know that that’s not how I want to have a child whatsoever. In fact, I don’t want any needles or other medical instruments to be involved at all.

So that makes two reasons so far why I can’t/shouldn’t get pregnant: the chemo may have destroyed that capability, and I don’t want to pass my genes on. Even if I circumvent these two problems, there’s a third: in order to prevent recurrence, I will be on endocrine therapy for a decade. That means that my ovarian function is suppressed and the estrogen receptors in my cells are blocked.

Theoretically, then, I could have a child when I’m 37, after that part of my treatment is over. But at 35, I become eligible to have my ovaries removed to prevent ovarian cancer. So you can bet that within weeks of my birthday I’ll be back in the hospital for that. There won’t be a window for a pregnancy to happen.

Of course, there could be if I asked to delay that surgery, which they would. 35 is just the earliest age when they’ll agree to do it. But to me that’s just like my decision about delaying chemo to freeze my eggs: in a word, nope.

So, in a matter of weeks I understood that becoming pregnant would be impossible, inadvisable, unethical, or at least more risky than I’m willing to accept. That option summarily slid off the table. I started to consider seriously the fact that adoption would be my only practical way to start a family.

At first I highly disliked this option too. There’s a lot to criticize about how adoption works in the United States. I hated to think that I might end up adopting a baby that some mother–probably young, probably poor, probably non-white–had been pressured to give up. International adoption felt out of the question to me, for similar reasons plus white saviorism. And if we’re being honest, I’m also appalled at the idea of paying such frankly ludicrous sums of money to adopt a child who needs a home anyway. It’s not like the adoption agency is doing me some sort of favor.

And I worry, too, about having a child with an unknown genetic legacy. At least in my family we know what the dangers are. With an adopted child, how would I be able to guide them to take care of their health in adulthood if we have no idea what their vulnerabilities are?

Then again, my parents didn’t know I had the BRCA gene, either.

But in any case, these are mostly solvable problems. I can do my research to ensure that my adoption is as likely as possible to be ethical and non-exploitative. I can make sure my child’s birth parents are as present in their life as they want to be. I can, somehow, save up $30,000. I can accept that we can never fully plan for medical crises.

Once I realized this, my thoughts about becoming a parent started to lose that murky quality that they used to have. I’m still not sure if or when I want to start a family, but I’m no longer distracted by my overwhelming fear of pregnancy and childbirth. Now I can imagine what it might be like to have a baby without all of those visions being clouded by phobia.

As you can imagine, things seem a lot more positive when they aren’t preceded by nine months of suffering. I imagine welcoming a baby into my home without already being wrecked with pain and fatigue. I imagine greeting my baby for the first time with my mind clear and my body strong. I imagine weathering the sleep deprivation of caring for a newborn without already being so depleted by pregnancy and childbirth. I imagine feeding my baby without pain or discomfort. (Obviously, no breastfeeding after a double mastectomy, even if I give birth.) I imagine being able to maintain a sexual connection with my partner even as a new mother. I imagine the months and weeks before I bring my baby home to be full of celebration and activity, not exhaustion, pain, and panic.

I like the idea of meeting my child standing up and wearing clothes, not lying in a hospital bed, covered in bodily fluids with tubes coming out of my body.

Weirdly, that’s what feels natural to me. Pregnancy and childbirth is what feels deeply unnatural, grotesque, and wrong.

And now I’ll never have to go through it.

Of course, that’s ridiculous to even say, because I never had to go through it. I could’ve always chosen adoption if I wanted kids. I know that. But it would’ve been a much more complicated choice, and I would’ve been expected to continue to defend it, or at least say something about it.

Now pregnancy and childbirth are off the table, and although they were never the only things on the table, they took up more than their fair share of space on it. Now there’s plenty of space for other possibilities, possibilities that I might actually enjoy considering.


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The Freedom of Infertility

Why I Told My Clients I Have Cancer

Self-disclosure–what to share about yourself with a client, and how–is a big topic of debate among therapists. Some old-school psychologists think that you should share as little as possible, and be a “blank slate” to avoid distracting the client from “the work.” Other therapists, especially those who operate within a feminist or relational lens, tend to believe that appropriate self-disclosure can strengthen the professional relationship and move the work along.

Most agree on a few things, though–don’t share personal medical details with your clients, and don’t share anything that you haven’t fully worked through already. It’s one thing to mention to a client that you went through a divorce years ago and that there’s no shame in it and that healing will come; it’s another to tell a client that you’re actually on your way to the attorney’s office after work.

I was, until recently, completely on board with these general guidelines. Then I got diagnosed with cancer, and suddenly they didn’t work for me anymore.

Almost immediately, I dreaded having to explain my absence to my clients somehow. I didn’t know anyone in my field who’s ever gone through anything like this. Neither of my supervisors at work did, either. Most of the time when something medical interferes with work, it’s rather more straightforward than cancer treatment–for instance, a surgery. You tell your clients, coworkers, and supervisors varying degrees of detail about the fact that you’ll be out for 6 weeks, and gently shut down any inappropriate questions.

I, however, was about to start chemo and I’d be working through it. I wasn’t sure how much, and I knew that might change as I went through treatment. As it turns out, it’s uniquely impossible to be vague or coy about cancer treatment. I knew right away that if I tried to spin some bullshit about how I’d be off a few days every other week for “my treatment” and then start showing up in wigs, I would come across like I’m either ashamed of it, or think my clients are children. People know what it means when you miss work every two weeks and lose your hair.

Unable to get any clear direction from professionals with more experience, I went next to Google. Here I found a number of articles by therapists who’d had cancer. They all told their clients that they’d be “leaving this position” and referred them to other therapists. I was confused. Were they not planning on returning to work? Would they have to just build up an entirely new client base? That sounds like a lot of fun on top of recovering from chemo.

One article described a therapist processing her imminent departure with her clients and having to pretend that she was moving on to another job, and reassure her clients that it wasn’t because of them and that she really valued working with them.

Later, she received an email about her own former therapist, who had terminated treatment with her the same way. He’d died of cancer.

Ultimately I decided that this level of deception and fakery not only goes against my ethical values, but would literally be impossible for me to manage. Telling my clients I had cancer was painful enough; I couldn’t imagine having to also pretend that the cancer was actually a cushy new job. Having to apologize to my clients for leaving our work unfinished as if it had been my decision, rather than a horrible thing that happened to me.

So I went for the opposite extreme. I told every single one of my clients that I’ve been diagnosed with breast cancer and would be undergoing chemo followed by surgery. I invited them to ask me any questions they wanted about it and reassured them that I wouldn’t answer anything I truly felt uncomfortable with. Some didn’t ask for any details at all. Most asked if I felt okay to be at work. (I did.) A few wanted to know more–what stage, what type of surgery, what chemo feels like, if cancer runs in my family.

Was it awkward? Sometimes. Did it distract from the client’s therapeutic needs? Maybe, in some ways. Is that ideal? No.

The problem, though, is that therapists are in fact human, and we have human bodies that fail in the same glorious ways as everyone else. I don’t believe I could’ve continued to do this work effectively throughout my chemotherapy while actively deceiving clients about what I’m going through. I also don’t think that would make me a very good role model.

A lot of surprising conversations came out of it. One client revealed his own battle with cancer, years ago. He’d never talked about it. A few mentioned that they really ought to be doing breast self-exams because it runs in their families; I told them where to get more information and explained that when caught early, breast cancer is extremely treatable. One client, surprisingly, brightened and smiled when I told her. She explained that a beloved relative is a survivor of breast cancer several times over and that this relative is her mentor and source of inspiration.

Another client said she was glad I told her. “I’ve been working on being more vulnerable and open with the people in my life,” she said. “If you’d tried to hide this, it would’ve sent the wrong message.”

That conversation was a reminder that while therapists often keep personal information from clients in order to “protect” them or to avoid distracting them, clients may interpret this secrecy as a product of shame, callousness, or both.

That’s not to say that my transparent approach hasn’t had its downsides. It does sometimes make my clients feel awkward about sharing their own problems; cancer tends to be that thing people remind themselves at least they haven’t got, so it can be weird to vent about your shitty job when someone’s just dropped cancer into the conversation. But I always reassure my clients that 1) I’m here because I want to be, and 2) I still see their problems as valid and important even though I have cancer now. The awkwardness usually doesn’t last.

It does sometimes make things harder for me, though. When I was first diagnosed and didn’t know the staging or prognosis, I could hear the unasked question on many of my clients’ minds. No, I didn’t know if I was going to survive or not. (Even now, with chemo going swimmingly, I can tell you that I’m pretty unlikely to die of cancer, but recurrence is a thing and it could happen anytime.) I could only tell my clients the same thing I could tell myself–that I had no reason to expect the worst, so therefore I’d hope for the best.

Sitting with uncertainty is one of the most difficult things in life, and probably the most difficult thing about cancer especially. Yet it’s also one of the most important skills to develop, for me and for my clients too.

As treatment went on, I often found myself having to be a bit performative when clients asked how I’m doing. It’s true that chemo isn’t too bad and that I feel okay most of the time. But some days are very hard. Yes, there were days when I wished I’d stayed home from work, but I didn’t because I wanted to be as consistent as possible with my schedule. (There were other days when I called off even though I’d planned to be there.)

Most days, I’m not my best self at work. I’m just not. It’s just impossible. The only other option would’ve been to take all four months of chemo off work entirely, but that would’ve been worse for my clients, worse for me, and ultimately impossible. I don’t have enough medical leave for that.

So although I don’t tell my clients many details about treatment, I continue to be transparent. I’ve told them that I feel tired a lot. I’ve mentioned that chemo sometimes leaves me with bone aches, which is why I stay home a few days after each treatment. I keep a positive attitude and tell them that many chemo side effects are very well-managed with medication and that chemo isn’t what it used to be. My hope is that if any of them end up being diagnosed with cancer, or having a loved one who is, they’ll remember that, and they’ll remember not to be afraid and to ask the doctor for help if they need it.

Disclosing this to my clients a week after diagnosis–telling 40 or so people that I have a potentially lethal illness and then taking care of them around that disclosure–is the most difficult challenge I’ve faced in my professional career so far. I found myself having to reassure people about something happening to me, something I found (as most people would) horrible and terrifying.

This situation turned the usual ring theory inside out. Normally the person at the center of a trauma or tragedy is the one who gets taken care of by everyone else. But as a therapist, it’s my job to take care of my clients. Which is probably why the conversations were sometimes so raw and awkward–my clients sensed that they “should” be the ones comforting and reassuring me, but they also understood that that’s not their role. And because of the strong therapeutic relationships we’ve already cultivated, we were able to talk about that directly.

I had my last chemo treatment this past Monday, so things are going to be more straightforward from here on out. But that doesn’t mean I’ll be able to stop having conversations about this with my clients. I have multiple surgeries and other procedures in my future and it could drag on for years. I may not be able to be at work as much as my clients (or I) would like, but I hope that by being open and honest I can reassure them that help is available even when I’m not there and make sure they know how much I wish I could be there with them.

Over the past four months, I’ve had to radically redefine what professionalism and appropriate self-disclosure mean to me. As it turns out, vulnerability isn’t just good for my friendships and partnerships; it’s good for my professional relationships too.


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Why I Told My Clients I Have Cancer

Where I Am and Where I’ve Been

Closeup of a frozen creek.
A scene from my favorite winter hike so far. Also an apt metaphor.

For weeks now I’ve been begging myself to write something, anything. But the words just don’t come.

It’s not that I don’t care anymore about the things I used to write about. Though I do click away from the news a lot of the time, I know I care, it’s just that my brain is usually too full with a buzzing sort of panic about my impending loss of autonomy, mobility, dignity, bodily integrity. That’s when I’m not panicking about simply dying.

I think about very little else anymore. The surgery. Researching everything I can about the surgery. Looking up and buying things for after the surgery, special clothes, pillows, anything to reduce my dependence on other people. Writing down lists of questions to ask some doctor at some point. I’m not always sure which questions should be directed to whom–the medical oncologist, the surgical oncologist, the plastic surgeon, the anesthesiologist, a social worker. Recounting to my parents my meticulous list of boundaries to retain whatever control I can over this impending horror–instructions about when they can and can’t see me in the hospital, when to give my phone back to me, who can touch or see what or how. Listing activities I may be able to do while I’m recovering–reading, writing, knitting, gaming, drawing–and making sure that I acquire everything I need for all of these things just in case something sticks. Planning out outfits that I will be able to dress myself in, independently. Asking the surgeon questions like, “Are you saying you don’t RECOMMEND that patients do this on their own, or just that they may find it uncomfortable and want to ask for help?” Because I will take the discomfort.

It has turned into a full-on obsession, and some part of me realizes it’s not healthy, but at the same time it’s also a coping method. It is easier, and probably healthier, to make packing lists than to let myself “be with” the fear, and imagine over and over being ripped open and stitched up again with tubes coming out of places they shouldn’t be and stuff that’s not supposed to be inside my body being inside of it and stuff that was supposed to be in there not being there anymore. And to be clear, I certainly imagine plenty of that. It comes completely unbidden. It’s a wild, untamable, primal fear. I’m like an animal being led to slaughter. My mind flings itself against the bars of its cage, over and over, despite the damage it does.

This is what it looks like to face down your worst, most paralyzing phobia. I used to say, half-jokingly, that if I ever required the sort of surgery that involved general anesthesia and opioids, I would refuse and simply die. Life called my bluff. I’m not dying, at least not yet.

Plenty of people have pointed out that there’s something maddeningly counter-intuitive about treating early-stage breast cancer, and that’s that it often feels like poisoning and mutilating a perfectly healthy body. I had no symptoms aside from an innocent-looking lump that nobody, not me and not the doctors who initially observed it, really thought could actually be cancer. Now that lump is gone thanks to an overwhelming response to the chemo, and I have to face the idea of having part of my young and tumor-free body hacked off so that I don’t die later. There’s also the thought that if I hadn’t noticed the lump, I might very well be dead now, or rapidly getting there.

The thought keeps going through my head: “And for what?” But I know for what. It’s so that I don’t die. That’s literally all. And though a double mastectomy doesn’t guarantee a cancer-free future, it at least offers a strong hope for one. Without it, that hope would be quite frail.

At the same time, and perhaps because I never exactly felt “sick” or thought of myself as sick, it feels like I’m sacrificing an awful lot just to have what I always naively assumed I’d have anyway–a reasonably long and healthy life. The surgery doesn’t feel like a treatment; it feels like the disease itself. I’m not healing from cancer, I’m healing from something I elected to have done to me, for reasons I can’t quite remember some days.

And yet, being the sort of person I am, I never seriously considered not doing it. Anything other than the double mastectomy seems like a betrayal of who I am, not to mention a betrayal to my loved ones who would have to spend the rest of their lives, like me, fearing recurrence. None of us deserves that kind of fear.

The surgery is a sacrifice that present me is making for future me, for some version of myself I can’t quite envision yet but will have to eventually become. That person will have accepted her new body, or at least gotten used to it. That person will, like the women in my support group, joke cheerfully about the awkward things that happen when you have no sensation left in your chest anymore. That person will maybe date new people again and find some way to explain the breasts, or not. That person will still think about cancer but not every single day.

That person will no longer believe that she’d rather die than get surgery. That person will also be much older than her years.

Don’t get me wrong, this isn’t the way I’d recommend doing exposure therapy for your medical phobia. But this is the way I’ll have to do it.

This is my longest, darkest winter, the winter time stood still. You don’t move forward when you’re fighting something like this; you’re just planting your feet, pushing back, and hoping not to be thrown off the ledge. My career is at a standstill—I have no idea when I’ll get enough supervision hours for independent licensure now. I forget the last time I met a new interesting person; it used to happen every week. I exercise and yet my body grows no stronger. I don’t really get to try and learn new things anymore. Everything I’d planned to do—practicing on the motorcycle, starting a vegetable garden, volunteering at the humane society or the botanical garden, planning a future coaching business, looking into selling my bread at the farmers market—is now delayed indefinitely.

That I knew something like this was probably coming doesn’t help much. For the two years leading up to my diagnosis—the two years since I moved to Columbus—I loved my life so much that I knew it couldn’t last. “Something’s going to happen to fuck this up,” I thought. I’d spent most of the first 24 years of my life pretty miserable, and now I finally wasn’t, and it couldn’t last.

And it didn’t.

And yet, unbelievably, it also did.

There is so much joy still in my life, if not every day then enough to carry me through. I spend entire days with friends sometimes, or else catching up on my library books with the cats cuddled up against me. My parents and sister and I laugh till our sides ache as my brother demonstrates parkour on the lawn in front of my house. Letters and cards arrive weekly in the mail from distant friends, some of whom I’d honestly thought had forgotten me by now. The teapot whistles urgently on the stove. Snow falls, and then rain, and then more snow again. There’s an orchid show at the botanical garden, and I went with my camera, struggling to kneel to take the pictures and stand back up but doing it anyway. It’s 8 degrees, but we go hiking anyway. The regulars at my yoga studio are starting to recognize me, and to know what the hat means. My older brother in London sent me a Switch for my birthday; now when I close my eyes I see beautiful scenes from Zelda instead of body horror. My body aches unbearably sometimes from chemo, so people bring me things. My oncologist calms my panic with his presence the moment he enters the exam room. A coworker finally learned to text just so she could check in on me when I didn’t answer the phone.

And, outside, the days slowly lengthen, and the January chills are gone. Three seasons will have passed by the time all of this is even on its way to being over. The mint in my backyard will have grown back. It has a way of enduring.

As it turns out, I have a way of enduring too.


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Where I Am and Where I’ve Been

Everything You Ever Wanted to Know About Having Cancer

[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Continue reading “Everything You Ever Wanted to Know About Having Cancer”

Everything You Ever Wanted to Know About Having Cancer

How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

Okay, maybe this is kind of turning into a Cancer Blog.

[Content note: medical stuff]

One of the first things my oncologist said to me at the beginning of this whole wild ride was, “Don’t Google.”

Wise words. For the most part, I haven’t. I’ve used some well-vetted websites (such as the American Cancer Society) to help myself prepare for things, but I’ve never intentionally sought out other types of medical information and narratives.

However, Google being how you access legit medical websites as well as blogs, things have nevertheless found their ways onto my screen that shouldn’t have. Some of this was probably unavoidable; some of it definitely wasn’t, especially when people sent me links or I clicked on them.

There’s a lot I didn’t understand about the psychological side of medicine until recently, but once I did, things started to make sense and I started to notice things I’d never noticed before.

For instance, well-trained doctors and nurses who are not characters in TV shows or moralizing children’s books never say “THIS WILL HURT A LOT.” Actually, they don’t even say, “This will hurt.” They say, “You will feel a pinch.” They say, “There might be a burning sensation at first, but it’ll go away in a few seconds.” They say, “You’ll feel a sting when I numb the area, but after that you won’t feel anything. If you do, tell me.” They say, “Some patients find this uncomfortable. If it’s too much for you, let me know and we’ll see what we can do.”

I started to notice that as much as possible, they stay away from words like “hurt,” “pain,” and anything vague or emotionally-charged.

Then I noticed how my doctor responded when I asked about pain management post-mastectomy. He said, “We use a multi-modal pain management protocol. You get four different medications, one of which is an opioid. We find that when patients return for their one week follow-up, the majority of them voluntarily return the opioids to us, saying that they only took a few of them or never needed them at all.”

Next I asked about chemo side effects. He said, “The main side effect patients experience nowadays is fatigue. Everything else is very well-controlled with medication, so if you’re still experiencing nausea or other side effects, let us know and we’ll add medications to control it or reduce the dose of the chemo. Even with fatigue, it varies. The best way to counteract it is exercise. Try to get yourself moving at least a little bit every day. Most of my patients continue to work during chemo, if not full-time. One of them even ran the Columbus Marathon during her treatment.”

Notice what’s going on?

Whenever the question of pain, discomfort, and side effects comes up, good medical providers do several things:

1) They are honest about what most patients can expect, but
2) They don’t focus on the negative aspects or use emotionally charged language to describe it
3) When most patients can expect a positive outcome, they emphasize that
4) When discussing pain or other side effects, they quickly shift focus to what THEY plan to do to address it.

This is very important, and that’s where the psychology of pain comes in. Research shows that expectations of pain play a huge role in our subjective experience of pain—expect something to hurt a lot, and it probably will; expect it to be tolerable, and it’ll hurt less. That doesn’t mean you’re going to magically feel no pain—we have nerves, after all—but there’s a degree of subjectivity to it and we’re learning that it’s a rather large degree.

Unfortunately, once you’ve become convinced for whatever reason that something is going to be very painful, it’s very difficult to un-convince yourself of that, because at that point your brain’s fear response has sort of taken over. That’s why it’s important to manage what information you receive beforehand so you don’t end up with an expectation of intolerable pain.

And that’s why my doctor told me not to google stuff.

Doctors don’t want patients freaking themselves out with graphic descriptions of painful procedures not just because they want to help you avoid panic attacks and unnecessary stress. It’s also because expecting severe pain can lead to experiencing severe pain. More pain means more pain medications, a greater risk of complications and addiction to those pain medications, a longer recovery time, and a generally all-around shitty experience.

A wonderful book I just read, What Patients Say, What Doctors Hear by Dr. Danielle Ofri, describes this phenomenon and cites research dating back decades. From a Washington Post review of the book:

We’ve known for decades that doctors who offer empathy, build trust and set expectations help their patients fare better. As far back as 1964, a study conducted with abdominal-surgery patients illustrated what Ofri calls the “demonstrable effect of the simple act of talking.” Before surgery, half of the patients were visited by an anesthetist who said pain afterward would be normal and would last a limited amount of time, and explained how patients could relax their muscles to lessen the pain. These patients needed half the pain medication of others who didn’t receive a pain talk. If we are an overmedicated nation, better communication would seem an easy and cheap way to relieve that burden — except that listening takes time, and doctors don’t usually have that.

If doctors don’t always have the time to talk to patients about pain in this calming, practical way, we now have the internet to step in and fill the gap. Sometimes it does this well, but often it does it very poorly.

We all know cognitively that you’re likely to find a disproportionate number of negative stories online because people who have a positive or neutral experience are less likely to take the time to describe it, whether that experience is with a restaurant, lawn care service, book, or medical procedure. We know this, but when you’re scared about your upcoming surgery and you stumble upon some first-person accounts, you’re not thinking of it that way and you can’t think of it that way. The fear response takes over.

Even if the experience being described is quite typical and probably fair to expect, it still does patients like me few favors to read those descriptions. First of all, subjective experiences of pain are, well, subjective. One person’s terrible pain could be my absolutely tolerable pain, and there’s no way to know it. Pretty much everyone has pain after surgery; that’s to be expected. But reading about it can still harm me by causing me to expect more pain than I would’ve otherwise had.

Different online sources also have different motivations. I’ve read a few blogs by cancer patients and found most of the accounts there to be pretty neutral and even-handed when it comes to describing cancer treatment. Yes, it sucks, but since these bloggers were documenting their journeys overall, they also described the parts that were okay, and the parts that were just boring, and even the parts that were interesting and better than they expected.

But as soon as you get into first-person narratives being published on websites like Buzzfeed and Slate and whatever, you’re going to see a much more skewed version of things because, as I’m furiously finding out, people love a graphic, miserable cancer narrative. People eat that shit up. Painful medical procedures, disgusting post-op symptoms, bizarre side effects, the works. It gets clicks. It infuriates me.

Even if those experiences are very much real, it doesn’t do someone like me any good to read it. Some patients justify it by claiming that it helps us be better “prepared”—I used to do this too—the fact is that it doesn’t make is better prepared. It makes us less prepared, because it makes us expect the worst and therefore ultimately have a worse experience.

So, when you come across these “raw” and “honest” cancer narratives and you feel the urge to send them to your friend with cancer to help “prepare” them or because you think they might find it validating, take a pause and ask yourself 1) who this is primarily being written for and 2) how exactly this will prepare your friend for what they’re about to face. Put yourself in their shoes. Imagine you’re going through treatment for a deadly illness, and you don’t know if the treatment will even work or how much damage it’ll do to you in the process. Would reading this material help you? If not, it won’t help me either.

What I do find helpful is neutral, matter-of-fact explanations of what I can expect. The best of these have come from my hospital itself, which makes tons of handouts available to patients. Here are some pages from the one they gave me about mastectomy and reconstruction surgery:

This slideshow requires JavaScript.

Websites like the American Cancer Society, the National Breast Cancer Foundation, and BreastCancer.org also do this well. When I do google, these are the websites I usually click on.

And in terms of speaking to people, two conversations have made a big difference in calming me down and setting more positive expectations for surgery. One was the appointment in which my doctor told me about how most of the opioid medications get returned within a week. The other was when my mom, who had a c-section twice, told me that post-surgery pain just felt like a very strong muscle ache, as if you’d worked out super hard the day before. That was very reassuring. I am no stranger to strong muscle aches.

In my social circles, we generally value sharing and listening to people’s personal experiences, and we emphasize that everyone’s experience is valid and important and so on. I agree with this, generally. But right now, as I’m going through cancer treatment, everyone’s personal experience is not important to me, and I shouldn’t read and give credence to something just because it’s someone’s personal experience. Doing so can not only give me panic attacks, but literally cause me to feel more pain.

So for the time being, I’m trying to stay away from negative and emotionally-charged accounts of cancer treatments, and my friends can help by not encouraging me to read them. If necessary, I’ll “prepare” myself by talking to my doctors. They have yet to make me regret it.


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How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

The Context of the Thing

[Content note: sexual harassment/assault, victim blaming, racism, police brutality, homophobia, fat shaming]

Many debates in the realm of social justice and politics are debates about context. In what context are certain things said, and can those things ever be divorced from that context? Should they ever be?

Take this Facebook post, made by a New York coffee shop I had heretofore found entirely satisfactory:

A Facebook post by The Bean, including a photo of a NYPD police car and a caption, "Thank you NYPD for protecting our great city."
Image description: a Facebook post by The Bean, including a photo of a NYPD police car and a caption, “Thank you NYPD for protecting our great city.”

 

What is so irritating about this post is the plausible deniability. Surely, a Manhattan coffee shop could just post this image apropos of nothing, perhaps in the holiday spirit, to express gratitude towards the city’s police force. It could just be a matter of city pride; certainly we all like it when there is as little crime as possible. And so on and so forth.

But why post this image now? Why would a coffee shop that has posted nothing but photos, comics, and articles about coffee, store news, six posts about local events, and one cutesy article about Mother’s Day for the entirety of the year 2014 suddenly give a shout-out to the city police department?

I think I know why. But, of course, I can only speculate.

So it is with a lot of other statements that rankle, hurt, or even trigger. “What were you wearing?” Oh, sure, you could just be curious. After all, maybe it was my outfit and not my perceived gender that drew my harasser’s attention that night. Of course, you are very worried about me and just want to make sure that I’m being “smart.” You’re not thinking about the fact that that’s often the first question authorities ask us, and that fashion advice is the only kind of prevention they seem to be able to offer us. You’re not thinking about what happens to women whose outfits were deemed insufficiently preventative. Who helps those women? “Oh, I’m not saying it’s your fault,” you say. “I think anyone who does such a thing is wrong and bad and if it were up to me I would bring them to justice.” Would you? Okay, I’ll grant you that. But historically, that’s not what’s happened, is it?

“What about black-on-black crime?” Certainly it is a tragedy that so many young Black people die at each other’s hands, presumably because of gangs or drugs or one of those other scary things, and really, if a given group wants to stop dying, maybe they should stop killing each other. Never mind that the same ignorance that causes people to ask this question is the ignorance that keeps them from seeing everything that’s already being done, by Black people, to address this issue. Never mind that most white murder victims are killed by other white people, too, because people tend to be killed by those who are near to them and/or have some sort of relationship with them, and our neighborhoods and relationships are still very segregated. Never mind that “black-on-black crime” is a derailment from what is in my opinion a much more preventable issue–the fact that police around the country are killing Black people with virtually no consequences.

Yes, violent crime happens, especially in disadvantaged areas, and that is awful. But that the people tasked with “protecting” us, according to my local coffee shop, are murdering people, especially in a systematically racist way, deserves immediate attention and resolution, because a police officer who murders innocent people is an even greater threat to our society than an ordinary citizen who murders innocent people. Why? That should be obvious: cops have power, weapons, skills, and immunity that ordinary citizens do not. Law enforcement officials can do things like plant meth in the car of a woman who accused them of sexual harassment and then have her arrested on this country’s ridiculous drug laws.

“I don’t see anything wrong with gay people, I just don’t see why they have to be in my face about it.” No, you’re right. Perhaps you are a person who believes that sex, love, and relationships should be an entirely private matter. Maybe you’re uncomfortable when your coworker tells everyone about the vacation she’s planning for her and her husband’s anniversary. Maybe it turns your stomach to see free condoms handed out on your campus. Maybe you change the channel every time a guy and a girl kiss in a TV show and you don’t feel that it’s appropriate for children to see a man and a woman holding hands in public. But you don’t mention that because…maybe people would ridicule you for it, whereas publicly stating that gay couples gross you out is still socially acceptable. I don’t know.

Or maybe you have double standards for queer people versus straight people, and you believe that the things straight people get to do–hold hands and kiss in public, chat at work about their anniversary plans, see relationships like theirs on television, access the healthcare that they need–are not things that queer people get to do. Sometimes queer people are loud and in-your-face about being queer because they are fighting against the idea that they should have to be silent when straight people don’t have to be. Your casual remarks about “I just wish they’d keep it to themselves” are telling us to get back in the closet so you don’t have to be uncomfortable.

“Of course it’s wrong to hate people just because they’re fat, but they really need to lose some weight or else they’ll be unhealthy.” You may think that what you’re saying here is commendable. After all, you must really care about this person and have great concern for their wellbeing. Maybe you even have some helpful weight loss advice that totally worked for you. Really, they should be grateful that you’re trying to help them.

Okay, but the idea that “they really need to lose some weight or else they’ll be unhealthy” is the idea that causes people to hate them in the first place. If weight is perfectly correlated to health, and if losing weight is a possibility for everyone, then only those who do not care about their health would allow themselves to be fat, and only an irresponsible person who lacks self-control would refuse to care about their health. Such a person would not make a suitable employee, doctoral student, or partner, for instance. Such a person would be a bad influence for your children. And the idea that fatness is responsible for poor health 100% of the time keeps fat people from getting the medical care they need, because doctors assume that the problem must be their weight.

Plausible deniability is how all of these statements function. We are expected to take them entirely out of context, as isolated thoughts or ideas or feelings or beliefs that have nothing to do with what came before or what will come after, and nothing to do with the horrors that have been committed in their name. You asking me what I was wearing has nothing to do with the systematic refusal to believe and help people who have been harassed and assaulted. You innocently wondering about black-on-black crime has nothing to do with centuries of white-on-black crime, and with the casual dismissal of this crime, and with the fact that it has historically not been defined as a crime at all. You wishing that queer people wouldn’t shove their sexuality in your face has nothing to do with our erasure, metaphoric and sometimes literal. You patronizingly advising bigger people to get smaller has nothing to do with their mistreatment in all sorts of social contexts, including medical ones. Nothing at all!

But that’s not how communication works. If a celebrity becomes the center of a huge controversy and I post about my love for their films or music, that can and should be taken as a statement of support for that celebrity. If a business comes under fire for its practices or policies and I post about how I’m going to proudly patronize that business today, that can and should be taken as a statement of support for that business. (In fact, I once ended a friendship with someone who did this on the day the Chick-Fil-A homophobia thing went viral, and I do not regret it.) There is of course a chance that I had simply not heard of the controversy, but in that case, I should reconsider my support for this person or business once a friend helpfully comments and lets me know about what’s going on. And in most cases people do not do this.

So if you post about your gratitude to the NYPD right after one of its officers has once again gone unpunished for the cruel killing of a Black man, and as protests march right down the block where your coffee shop stands, that has a context, too.

I suppose it can feel like this is all a huge burden. Why shouldn’t you be able to just say what you think and feel without being held responsible for decades or centuries of terrible things done in the service of the beliefs that you are expressing? It’s true that what happened is not your responsibility, and every terrible thing done by people who believe the same things you believe is not your fault.

But that is why what you say hurts people, and that is why they warn you where your beliefs may logically lead. If what women wear has any relevance to their sexual violation, if black-on-black crime is more important and urgent than white-on-black racism, if queer people being open about themselves and their loves is so unpleasant for you, if fat people should lose weight before they are taken seriously–then that has implications for how we treat people and issues. If you take the time to listen to the voices of those most affected by these issues, you might see that these implications are just as horrifying to you as they are to us.

The Context of the Thing

Correlation is Not Causation: STI Edition

I wrote a piece for the Daily Dot about a new study on STI rates among men who hook up with men using smartphone apps, and how easy it is to misinterpret the results.

new study by the L.A. Gay & Lesbian Center and UCLA suggests that men who have sex with men and use hookup apps like Grindr are significantly more likely to have gonorrhea and chlamydia than men who have sex with men but do not use such apps. But before you panic and delete Grindr from your phone lest it give you an STI, let’s look at what the study does and does not actually show.

[…]Careless headline writers frequently mix up correlation and causation, spreading misinformation and stigma. Despite Lowder’s balanced take on the study, the headline of his own piece reads, rather alarmingly, “Study Suggests Grindr-Like Apps Increase Likelihood of Sexually Transmitted Infections.” This wording implies that using such apps increases an individual’s likelihood of contracting an STI, not that, in general, people who use such apps are also more likely to have an STI. It’s a fine distinction, but an important one.

Another important distinction is whether the participants contracted the STIs during the course of the study (while using GSN apps) or just happened to have them at the time that the data was collected. Here Lowder’s article is also unclear: “Specifically, geo-social app users were 25 percent more likely than their bar hopping comrades to contract gonorrhea, and 37 percent more likely to have picked up chlamydia.” And an article about the study at Advocate is headlined, “STUDY: Smartphone Hookup App Users More Likely To Contract Sexually Transmitted Infections.”

However, the actual study notes that the participants were tested for STIs at the same time as they were asked about their sexual behavior, including the use of GSN apps. This means that they did not necessarily contract the STIs while using the GSN apps, or after having used them. The infections could have preceded the participants’ use of the apps.

This is important because it can help untangle the question of why this correlation exists, besides the obvious hypothesis that using GSN apps can actually cause people to contract STIs at higher rates than other ways of meeting sexual partners. Perhaps people who already have STIs are more interested in using the apps because of the anonymity—it’s much less scary to tell a random person you’ll never meet again that you have an STI and need to use a condom than it is to tell someone who’s embedded in your social network. Or, on the more cynical side of things, people might feel less guilty about not disclosing an STI to a random app hookup than someone they’ve met in a more conventional way.

Or, maybe people who are attracted to “wild” and “risky” sexual situations are more likely to have STIs and more likely to use GSN apps. The common factor could be impulsivity or recklessness.

Read the rest here.

Correlation is Not Causation: STI Edition

DSW Shoe Warehouse is Promoting Vaccine Denialist Jenny McCarthy

This is a short post to alert folks about a pretty crappy thing that DSW, a place where I ordinarily like to buy shoes sometimes, is doing:

Flyer for DSW's Jenny McCarthy event
Their Facebook post about this is, for whatever reason, visible only to certain Facebook users (weird targeted advertising perhaps?). I can still see it, as can Rebecca Watson, who’s already written a post about it. The DSW post with this image reads:

Hey, NYC—don’t forget!! Tomorrow we’ve got a BIG Shoe Lover party at DSW Union Square. Come shop amazing deals, grab an exclusive offer, and get the chance to meet Shoe Lover Jenny McCarthy!*

Wednesday, April 9 from 5–7 p.m.
DSW Union Square
40 E 14th Street | New York, NY 10003

RSVP and get full details: http://bit.ly/OoAVNt
See ya tomorrow!

*Participation in the event will be on a first come, first serve basis—so get there early! Line starts at noon.

I commented with the following:

Hey DSW, why are you hosting this vaccine denialist? Her continued claims that vaccines cause autism are scientifically incorrect and extremely dangerous. Parents who refuse to vaccinate their children threaten their own children’s health and that of other kids who are unable to be vaccinated for medical reasons. Several cities have already had outbreaks of diseases that are entirely preventable by vaccination and previously much rarer; parents refusing to vaccinate their children is a major cause of this and Jenny McCarthy actively promotes this dangerous idea.

I know your company’s about shoes, not healthcare, but it’s irresponsible of you to promote this person. I’m not shopping here again until this is canceled or apologized for.

They responded:

Hey Miri! We’d like to hear more about your concerns. You can email us at: [email protected]

And I responded again:

Thank you for your response. However, I have already stated my concerns, and I will not do so through private email when your event is *public*. Others deserve to know.

Here is more information about McCarthy and the very real harms she has brought to children and their families:

http://nypost.com/2014/03/18/anti-vaccine-activist-jenny-mccarthy-mother-of-plagues/

http://blogs.seattletimes.com/opinionnw/2014/04/04/anti-vaccine-measles-ignore-jenny-mccarthy/

http://jennymccarthybodycount.com/Anti-Vaccine_Body_Count/Home.html

Those links, by the way, are a great place to get started if you don’t know much about McCarthy and her promotion of dangerous and false vaccine myths.

We’ll see what comes of this, but for now, if you want to help us put some pressure on DSW, please email them at the address they provided ([email protected]), participate in the conversation on Facebook if you can see it, or tweet them @DSWShoeLovers.

As Rebecca also mentioned, Chili’s recently responded really well to a similar controversy. Hopefully DSW shapes up and does the same.

Screencap of the discussion on DSW's Facebook page, which isn't visible to everyone for some reason.
Screencap of the discussion on DSW’s Facebook page, which isn’t visible to everyone for some reason.

Update: Avi weighs in.

DSW Shoe Warehouse is Promoting Vaccine Denialist Jenny McCarthy

Some Evidence Against Shame and Stigma as Weight Loss Motivators

[Content note: weight/size stigma and discrimination]

It is considered self-evident by plenty of people that shaming fat people for being fat gets them to stop being fat. That’s why a common reaction to body/fat positivity campaigns is that they’re going to make people think it’s “okay” to be fat. As opposed to…not okay.

However, even if we begin with the presumption that it’s a net good for fat people to stop being fat, research evidence is rapidly piling up that suggests that shaming and stigmatizing them won’t work. In fact, it may have exactly the opposite effect.

In a paper recently accepted for publication in the Journal of Experimental Social Psychology, the authors provide this overview of research on this topic:

Media attention to obesity has increased dramatically (Saguy & Almeling, 2008), as has discrimination against overweight and obese individuals (Andreyeva, Puhl, & Brownell, 2008). Overweight individuals are often portrayed in the media as lazy, weak willed, and self-indulgent (Puhl & Heuer, 2009), and as a drain on the nation’s resources (Begley, 2012). Because stigma can be a potent source of social control (Phelan, Link, & Dovidio, 2008), some authors have suggested that stigmatizing obesity may encourage people to lose weight (Bayer, 2008, Callahan, 2013 and Heinberg et al., 2001), and policies that utilize potentially stigmatizing elements (e.g., BMI report cards) are becoming more prevalent (Vogel, 2011). Little evidence exists, however, that stigmatizing obesity promotes weight loss. In fact, among overweight individuals, experiencing weight-stigmatization is associated with greater reports of maladaptive eating behaviors (e.g., Haines et al., 2006 and Puhl and Brownell, 2006), increased motivation to avoid exercise (Vartanian & Novak, 2008; Vartanian & Shaprow, 2010), and poorer weight loss outcomes among adults in a weight-loss program (Wott & Carels, 2010; but see Latner, Wilson, Jackson, & Stunkard, 2009). Furthermore, experimentally activating weight stereotypes decreased overweight women’s self-efficacy for exercise and dietary control (Seacat & Mickelson, 2009). Collectively, these findings suggest that stigmatizing obesity has negative behavioral consequences that may increase, rather than decrease the weight of overweight individuals.

The paper also reviews research suggesting that the reason this happens is because of something called identity threat. When an individual has an identity that they know is stigmatized and something happens that triggers their awareness of that (such as a joke about the identity or a person who invokes negative stereotypes about it), the individual may experience negative effects. Some of these are physical, such as increased physiological stress response. Some are psychological, such as feelings of shame or anxiety. The person may try to act in ways that “compensate” for the flaws others may perceive in them or avoid situations in which people might think poorly of them (for an overweight person, this may include eating with people or going to the gym).

In theory, all this stress, anxiety, and effort depletes cognitive resources available for other activities that require what is known as executive function–mental tasks such as regulating emotions, setting goals, using short-term memory, and so on. Research has shown that when people of various stigmatized categories are reminded of those stigmas and stereotypes, their cognitive performance on a variety of tasks worsens.

The researchers in this study hypothesized that feeling identity threat would decrease participants’ ability to subsequently regulate their food intake. Specifically, they tested whether or not exposure to news articles about weight stigma would actually increase the amount of calories participants consumed. They believed that the participants who would be most affected would be those who believe themselves to be overweight, regardless of their actual weight, because they would be the ones who would feel identity threat when reminded that weight stigma exists.

The participants were 93 female college students (45% White, 24% Latina, 18% Asian/Pacific Islander, 3% African American, 10% other races). Prior to the study, they had filled out a survey that included a few questions about weight (the rest were just there to hide the purpose of the survey). When they arrived at the study, they were told that the purpose was “to examine correspondence among verbal, nonverbal, and physiological signals.”

They were randomly assigned to one of two conditions. In the test condition, they read an article called “Lose Weight or Lose Your Job,” which was compiled from actual news stories and described the discrimination that overweight people may face in the workplace. In the control condition, the participants read a nearly-identical article that was about smoking rather than weight.

Afterward, they were led to another room and asked to wait for the experimenter to return. The rooms had bowls of snacks that had been weighed prior to the study, and the participants had the opportunity to eat some of the snacks while they waited for 10 minutes. They were then asked to return to the previous room to complete a final questionnaire.

One of the measures on the questionnaire was called “self-efficacy for dietary control.” Self-efficacy refers to one’s sense of having the ability to do something and control one’s outcomes in that domain. This particular measure assessed the extent to which participants felt they could control their eating, avoid unhealthy foods, and so on. Various studies suggest that having a sense of self-efficacy is more important in terms of actual behavior than other factors, such as believing that the behavior is healthy or important. (For instance, here’s an example involving elderly people and exercise.)

The results were pronounced. In the weight stigma condition, women who perceived themselves to be overweight ate significantly more calories than those who did not perceive themselves as overweight. In the control condition, there was no significant difference:

The interaction between perceived weight and article type.
The interaction between perceived weight and article type.

Furthermore, women who perceived themselves as overweight had significantly lower self-efficacy for dietary control in the weight stigma condition than in the control condition, while women who did not perceive themselves as overweight actually had higher self-efficacy in the weight stigma condition than in the control condition.

This means that, within the context of this experiment, women who perceive themselves as overweight increase their food intake in response to hearing about stigma against overweight people and feel less capable of controlling their food intake. The very people being targeted by this information in ways many people think are helpful are actually being harmed by it, not only in the obvious emotional sense but even in their ability to control what they eat.

One really notable finding in this study is that actual weight did not correlate with either calories consumed or self-efficacy in either condition. Perceived weight was the relevant variable. I’ve often heard people argue against the body positivity movement because but if fat people don’t think they’re fat then how will they ever stop being fat?! Ironically, the women who did not perceive themselves as overweight had higher self-efficacy in the weight stigma condition than in the control condition.

One weakness of this study is that it is unclear whether or not the participants who increased their food intake did so consciously–or deliberately. If it was unconscious and not deliberate, then this finding may fit with previous findings about identity threat. If not, it’s still an important finding, but it’s probably easier to get people to change mental processes that are conscious and deliberate as opposed to those that are subconscious and unintentional. It’s also possible (though probably unlikely) that the women in the weight stigma condition purposefully ate more as a sort of symbolic protest. Oh, you’re going to fire me because of what I do with my own body? Well, fuck you, I’ll eat as much as I want.

Another limitation is that the type of stigmatization invoked in this experiment isn’t quite what overweight people might actually experience in their day-to-day lives. While articles like the one used in the study are common, the idea behind stigmatizing people so that they lose weight is usually more direct: for instance, telling them they need to lose weight, penalizing them for being overweight, and so on. Telling a study participant that they’re fat and ugly and need to lose weight would probably never pass an IRB review, but it would be a more naturalistic scenario, unfortunately.

While the sample used in this study is more racially diverse than many other samples in psychology studies, that really isn’t saying much. The researchers did not discuss any racial disparities in the data, but that would be an interesting direction for future studies. Also, all of the participants were young women, so it’s unclear how well this generalizes to older women and men of all ages.

With research like this, it’s important to remember that the findings should be interpreted much in the way that the statement “consent is sexy” should be interpreted. Namely, you should get consent because it’s the right thing to do, not because it’s “sexy.” Likewise, you should refrain from shaming and stigmatizing fat people because it’s the right thing to do, not because shaming and stigmatizing them doesn’t work anyway. Activists rightly criticize research like this for suggesting the implication that we should stop shaming fat people because it doesn’t get them to lose weight, rather than because it’s a shitty thing to do. That said, I don’t think that’s an implication that the researchers mean to give. We should conduct, support, and read research about how human motivation works (and how everything else works) because it’s important to know. This is just one piece of that puzzle.

It is my hope, though, that studies like this will work where “don’t be an asshole” won’t. The most important thing to me is for people to stop stigmatizing and discriminating against fat people, whatever the reason they stop doing it, because it’s harmful and needs to stop. Then maybe we can make these people understand why they were wrong to do it.

However, this research also opens up a lot of tricky questions. If shaming people who are overweight did actually help them lose weight, would more people think that this is an okay thing to do? If shaming people who do things that most of us would consider Definitely Bad, like rape or theft or even saying racist things, worked, would that be okay to do? Many would probably say yes to the latter but no to the former.

What is clear, though, is that human motivation (and reasoning in general) often works in ways that seem counterintuitive. You might think that people would respond to the stimulus of “being overweight can cost you your job” with “well I’d better stop being overweight, then!” But that’s not necessarily the case.

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Major, B., Hunger, J.M., Bunyan, D.P., Miller, C.T. (2014). The ironic effects of weight stigma. Journal of Experimental Social Psychology, 51: 74-80.

Some Evidence Against Shame and Stigma as Weight Loss Motivators