The Shame of Health
“Let’s just get rid of it. Let’s just take the whole thing out.”
“I don’t want to remove any body parts.”
“Well, you got three options: One, you get a hysterectomy. Problem solved. Two, you get pregnant as soon as possible. And three, you get Lupron shots. If you were my wife, I’d get you pregnant as soon as possible.”
I was diagnosed with Stage IV Endometriosis after a surgery to remove a baseball-sized cyst, which we thought was the cause of my debilitating episodes of pain. I woke up to a new world where I had a disease that never goes away. And now I had a man telling me to get pregnant, remove my reproductive organs, or inject literal poison into my bloodstream, because those are the best three options for treatment.
Since I wasn’t going to “get pregnant as soon as possible” or have a hysterectomy at 37, I went home to do some research on Lupron. Lupron is a chemotherapy drug developed to treat prostate cancer, which is alternately used to put women into temporary menopause. What I read about the drug made my heart race—message board after message board of women sharing how Lupron ruined their lives. They lost so much bone density that they had osteoporosis in their 20s. Their joints ached five years after ceasing the drug. They went so insane from the psychological side effects that they lost their jobs and marriages, and some were institutionalized. Some experienced amnesia and paralysis. Looking deeper I even found individual and class action lawsuits against the drug manufacturer—some even claiming Lupron was the cause of homicide. The manufacturer has already paid out $875 million in damages, and was also convicted for price-fixing, and criminally charged with fraudulent clinical trial data, drug pricing and marketing for Lupron
Why would my doctor suggest something like this? When I mentioned what I’d read to him the next time we spoke, after he ordered me the Lurpon injections ($250 each) without my consent, he said only crazy people leave comments on medical message boards.
It was sometime within the few days that followed, probably at 3am, that it became clear I had to take my health into my own hands. What happened next was hours and hours of research into the disease, treatment options, optimal diets, supplements, vitamins, root causes, personal stories, expert articles, medical journals, and more.
I learned more about women’s reproductive health in three weeks than I ever have in my adult life. And a lot of what I learned was pretty shocking. For example, I learned about chemicals (Dioxins) present in most women’s feminine products (and almonds) that cause a significant increase in incidences of endometriosis. Every month, for about seven days in a row, multiple times a day, I had been inserting this chemical into my body. Most women are doing the same. It bioaccumulates and it’s possible that as much as 50% of it can be excreted during lactation. I’m sure it’s great for babies.
After a lifetime of research crammed into three weeks, I made significant changes to my diet and lifestyle. I gave up espresso and quit caffeine altogether, after ten years of three shots every morning. I drastically reduced my alcohol consumption and cut out everything but red wine. I stopped eating soy, which is estrogenic, the hormone responsible for all the pain I’d been in. I stopped eating dairy, and checked off the last meat I had left on my list—fish. The goal of the diet is to eliminate foods that have or affect hormones and to mitigate inflammation. I started eating a large amount of green vegetables, and in general stayed clear from anything processed. I even started growing my own sprouts and brewing my own kombucha. There are very few things we can control in our lives and one of them is what we put in our bodies.
My relationship to food completely changed. I needed food to be my ally in the battle for health. I can feel nourishment in real time for the first time in my life, and when that happens, food becomes your medicine. But not a gross medicine you gulp down with a grimace—a medicine you crave.
Surprisingly, grocery shopping became really simple—fresh produce, olive oil and vinegar when needed, onions and garlic, chickpeas and tahini for hummus, nuts, seaweeds, coconut milk, and very little else. Eating healthy is not daunting. Toss some broccoli, cauliflower and asparagus in olive oil and salt, throw it in the oven for ten minutes, and you’ve got a delicious meal. Pile a bunch of vegetables, nuts, frozen berries and cashew milk in your blender and you’ve got a delicious and easy breakfast.
Re-entering the world as a soy-free vegan who doesn’t drink coffee and drinks alcohol only in moderation was weird. I felt a strange kind of shame, as if only snobs and elitists assert their dietary restrictions. I still feel guilt and embarrassment at a restaurant or house party when I have to admit I am vegan, or ask if there is soy in something (Soy is in everything by the way; you’d be surprised.) I feel like I have to justify my diet by letting people know it’s for a health condition, and not just vanity or an eating disorder.
Why do I feel so ashamed of taking control of my health and using food as my main weapon? I think about it a lot. I think about how people talk about others who are gluten-free, or even vegetarian. They talk about them like they are just ridiculous people. Wanting organic vegetables becomes a class issue. Yet vegetables are from the earth, and they are something we can create ourselves, with some seeds and a bucket of soil, regardless of income level. Food is free before it is stretched and separated and “enhanced” with “natural flavors” and FD&C Blue No. 2.
The pressure to be unhealthy is heavy in this country. Not eating pizza at a pizza party makes you a real bummer. It’s easier to pass your driver’s exam than turn down a round of shots. If you live in the progressive bubbles of New York City, Boulder, Portland, Asheville, or LA, you don’t see it as much. I’ve been in the South for over a year now and have seen people shamed for being vegan, and told to “stop ruining our neighborhood”.
Why are we indoctrinated to find comfort in food that isn’t nourishing? Why did I only want to eat Kraft Mac and Cheese and pizza for weeks after my father died? Why do we celebrate by eating a bunch of garbage? Admittedly, some garbage is delicious and we just need an excuse to shove it in our mouths (I’m looking at you, Doritos). It’s cultural and it’s unfortunate.
Despite my shame, I feel better than I have in years—physically and mentally. It’s a powerful feeling to take control of your health; to pull yourself up out of the swirling toilet of traditional western medicine that flushes us into the abyss of procedures that beget other procedures, which beget other procedures, which beget yet more procedures.
It’s hard to turn your back on what your doctor suggests; it can feel like an exorcism to get mainstream health beliefs out of your head. It’s so difficult to trust yourself, even when the system has failed you. Making the changes you need to take care of your body is the first step. You then need to answer questions about your decisions to anyone and everyone who notices you aren’t eating what they eat all the time.
“Where do you get your protein?” is a question I’ve been asked more times than I can count. Yet the person eating chicken nuggets from McDonalds, which by now we’ve all seen comes from a horrible pink foam-ish substance, isn’t asked where they get their nutrients. That food is killing people. More than 1/3 of Americans are considered obese—which leads to heart disease, the leading cause of death in the U.S. Vegetables are not killing people.
I never went back to that doctor. He’s not a bad guy; I think he just likes delivering babies and giving women injections to improve their youthful appearances more than he likes keeping up with endometriosis research. For the record, Lupron only works for the six months you take it (any longer and you lose too much bone density) and hysterectomies don’t cure endometriosis.
My story is not unique. Though it’s hard to know how many women have the condition because sometimes it is asymptomatic, current estimates suggest 7% to 10% of women have been formally diagnosed with endometriosis. Random biopsies for laparoscopic sterilizations have shown evidence of endometriosis in 25% of women. One study found the average diagnosis time to be twelve years. There is no cure and research is still inconclusive as to why it happens in the first place.
It’s especially important for women to take charge of their own health. No one else has to live in our bodies, and medical research is sexist and mired in the overflowing sludge of bureaucracy. Thankfully, accessing information is easier than ever before. You can help yourself, and we can help each other. It all starts with food.
Maggie Wells is the author of Pluto (The Wrath of Dynasty 2011), and co-editor of Emotion Road (Press Body Press 2007). She has been published in Best American Erotic Poems: From 1800 to the Present, The Cadence of Hooves Anthology, Nailed Magazine, Dick Pig Review, and others. She was featured in the Free Lunch mentor series and nominated for a Pushcart Prize in 2008.
Maggie is currently an advice columnist under a pseudonym and has been living in Nashville for the last 16 months. For a good time, you can read her poem, Role Play, here.