No, *you* eat salad. (And other things I almost said to doctors.)
I sit sweating on the exam table, my palms sticking to the thin, waxy paper beneath me. I glance at the door, imagine myself walking out. But the endocrinologist is standing right in front of me, rubbing sanitizer onto her hands. She flicks my shirt up to expose my stomach and gasps.
“These are the worst stretch marks I’ve ever seen!” Even as these words are coming out of her mouth, I know they will be etched in my mind long after the stretch marks themselves have faded.
And yet, this was a pretty good doctor’s appointment, compared to what had come before.
Let me back up.
Just before my 29th birthday, I went on prednisone in an attempt to treat some chronic GI issues I’d been dealing with since college. No one knew for sure if it would work for my specific conditions, collagenous gastritis and lymphocytic colitis, but my doctor thought steroids were our best bet for addressing the underlying inflammation. Nothing else had worked. In what felt like a true miracle, within the first couple of weeks of starting the prednisone, the worst of my symptoms just vanished. For the first time in 10 years, I didn’t have diarrhea every day.
Though the prednisone seemed to be working for my colitis, my gastroenterologist wanted me to go to the Mayo Clinic to see a collagenous gastritis expert there. Believe it or not, I was excited. I imagined the Mayo Clinic would be a spa-like environment where soft-spoken, intuitive doctors would hang on my every word and then huddle together to discuss my case. I imagined that I would finally be given a single explanation for all of the things that were ailing me.
What I got instead was fifteen minutes with Dr. Fanning. Actually I got fifteen minutes with his fellow, who then, in a shockingly stupid game of telephone, incorrectly relayed to him what I had told her about my history, while I was sitting right there. Dr. Fanning (not his real name) told me that he wanted me to switch from prednisone to budesonide, a different steroid that is supposed to act “topically” inside the GI tract and not be absorbed into the bloodstream. He said this would work better for my stomach and prevent the systemic side effects that can come with steroids. I told him that I had already tried budesonide twice, and my colitis symptoms had gotten worse while I was on it. He didn’t seem to hear me, or maybe he just didn’t care.
I had already gained about 10 pounds on the prednisone, but it wasn’t until I switched to the budesonide that I started to fully experience the side effects of steroids. At the same time, much as I’d predicted, my GI symptoms returned. I quickly gained 25 more pounds, stopped being able to sleep, and developed what are known as “buffalo hump” and “moon face.” (Those are both exactly what they sound like.) Stretch marks started showing up all over my body — my stomach, my thighs, even my still-skinny calves — jagged red slashes snaking further across my flesh by the day.
Shocked at these rapid, dramatic changes, which Dr. Fanning had explicitly reassured me wouldn’t happen, and certain that the steroids had given me Cushing syndrome (the symptoms of which are rapid weight gain, moon face, buffalo hump, and stretch marks), I emailed Dr. Fanning. I was sure he would tell me to start tapering off the medicine immediately. But instead, he responded that it was highly unlikely for budesonide to cause these symptoms, and it must be my diet causing the weight gain. His advice: “dramatically reduce your nutritional intake, focusing exclusively on green, leafy salads.”
At this point, I think I may have blacked out from rage. The advice to eat nothing but raw greens, which are high in fiber and difficult to digest, is absurd for someone with chronic diarrhea, let alone colitis. The fact that this advice was coming from the doctor who had prescribed me the drug that had so obviously caused the weight gain made it flat-out irresponsible.
This wasn’t my first brush with a doctor’s failure of imagination. I had spent the better part of a decade telling doctors something was wrong with my body. That it wasn’t normal for someone my age to feel the way I did. Knocking on door after door looking for someone who could help me. Time and again I had the fact that I appeared to be well thrown back at me as proof that I couldn’t possibly be sick. I was accused of “doctor shopping.” I was accused of hypochondria. I was accused of “wanting to be sick.” I was asked repeatedly whether I suffered from anxiety. I was told to just get more exercise, fresh air, green juice, therapy, a new job, a better attitude. I had to request the tests that finally revealed an immune deficiency, colitis, gastritis, an autoimmune disorder. All results I didn’t want, all of which brought a swell of bitter validation and relief.
I finally had something to call the symptoms that had plagued me for so long, and I was finally starting the process of getting some help. But it still wasn’t my illness that was visible, nor was it the healing that was taking place inside my intestines. Nor was it even the reaction my endocrine system was having to the medication that was also helping me. It was weight gain, the bluntest instrument doctors have in their arsenal of tools for deflecting responsibility.
Dr. Fanning didn’t want to be responsible for giving me a medication that wasn’t working, and he certainly didn’t want to be responsible for the side effects of that medication. When I looked well, doctors thought it was all in my head. Now that I looked sick, they wanted it to be my own fault, not theirs. Compounding this problem is the fact that doctors are not trained to be creative thinkers — in fact, quite the opposite. They’re taught to tune out the “noise,” all those little details (like feelings) that could distract them from the narrative they begin crafting about you from the first moment they see you. But in some cases, those distracting details may actually be cause to change the narrative. They’re taught that when they hear hoofbeats, they should think of horses, not zebras. This may work well most of the time, but not when you’re the zebra.
I knew Dr. Fanning was wrong, and I knew I needed to get off the medication. (Just noting here that I didn’t go to medical school, so it’s pretty weird that I have to function as a doctor.) Which brings me to the endocrinologist, gaping unabashedly at my stretch marks. As I predicted, she said she could tell just by looking at me that I had Cushing syndrome. While I was relieved to have my hypothesis validated (indeed, this was not about salad), the endocrinologist had also left me feeling laid bare by commenting on my appearance the way she did. Whether she meant to or not, she assigned more importance to the way my stretch marks looked than to what was happening with my hormones. I barely made it to the street before I burst into tears.
I started tapering off the steroids shortly thereafter, under the care of a new, wonderful gastroenterologist and a somewhat less offensive endocrinologist. When the weight started dropping off, it wasn’t only my doctors who remarked. Suddenly family members, people at work (including my boss), and casual acquaintances were commenting excitedly on their perceptions of my body, saying things like “You look so much better! Do you feel better?”
They knew nothing about my health, but they assumed they knew everything they needed to know just by looking at me. For a full decade I had been sick, but because I didn’t look sick to them, they assumed I was healthy. When I was on steroids, which were healing my colitis, they looked at me, saw fat, and assumed I was sick. Going off the steroids meant an adrenal crisis that landed me in the ER with a fever of 104.4 and a crippling bout of depression and OCD, but all people saw was that I was losing weight, so they assumed I felt better and was better. For most people, and for doctors especially, that contradiction was too counterintuitive — too radical — to believe.
It’s now been two years since I went off steroids completely. My body bears the imprint of that experience, both outside and in. The shape and the texture of my flesh is different and always will be. I will always have these stretch marks. Also, my colitis is gone.
I learned a lot from the cascade of utter bullshit that flowed from my taking prednisone. I learned that when you’re fat, you can’t go to the doctor without your fat somehow being blamed for whatever you’re there for, and it becomes even harder than it already is to get care for chronic illness. I learned that when you’re fat, your appearance becomes public property, up for conversation. But most importantly, I learned that sometimes how your body looks from the outside, how it’s functioning, and how it feels to be inside it have nothing to do with each other.
There’s not always a lot I can do about how my body works or feels. But I am beginning to learn that I can choose to love it despite all of this. Despite the fact that it doesn’t look how others would like it to and despite the fact that it doesn’t work how it’s supposed to in some basic ways. I can love it with stretch marks, I can love it plus or minus 35 pounds, I can love it with an autoimmune disease. I can love my body despite the way doctors disparage it and despite the corrosive effect their indifference has on it. I can love it despite what it has put me through. And this love, too, is radical.