Late last year, I was busy living my life as a full-time executive assistant and part-time student. Like most New Yorkers, my schedule was pretty punishing. My subway commute between Brooklyn and Manhattan was one hour each way. If I wasn’t working or cooking dinner, I was doing a reading for school or writing a paper. I even took classes on the weekend to get me closer to graduation. After juggling all of these responsibilities for a few years, I had learned to adapt. As long as I got a good night’s sleep and gave myself one day on the weekend to relax, I could handle it.
Then one day, my body stopped keeping up.
I started having difficulty waking up in the morning. Who hasn’t been there? I figured I just needed more sleep, but then it got to the point where no amount of sleep was enough. I could sleep for 10, 12 hours at a stretch on the weekend and still have to force myself to get up. Then came the difficulty breathing. I could be sitting at my desk and suddenly be unable to get a full breath. My hair began noticeably falling out, especially in the shower.
I had been diagnosed with Graves’ Disease three years earlier, and even though my condition was largely stable thanks to medication, I suspected my thyroid was to blame for these new symptoms. I paid a visit to my primary care doctor first. I had been seeing Dr. R for about a year, and while he could be a bit rushed in our appointments, I liked him just fine. After a very brief physical exam, he ordered a blood test and an EKG. To my surprise, neither revealed any abnormalities. Dr. R suspected anxiety, which surprised me. I have definitely experienced anxiety in my life, but this felt different. Yet my tests had come back okay, so I agreed to go on anti-anxiety medication.
I expected to feel relief after a few days, but instead my condition worsened. Along with fatigue, I began to experience bouts of what I call “nervous energy.” I celebrated Thanksgiving at a friend's house and had difficulty sitting still in my chair during dinner. I also had difficulty concentrating, making it very hard to socialize. Despite my normal test results, I decided to follow-up with my endocrinologist.
Dr. O and I had developed a comfortable relationship in the three years I’d been seeing her for Graves’ Disease. I explained all of my symptoms and how they seemed to be getting worse, but told her that my levels didn’t seem to be abnormal. I got another surprise when she attributed my issues to the new low-carb diet I was on.
“Carbs are good for short bursts of energy, so if you’re not eating any, that’s probably why you’re tired,” she said.
This answer left me cold. I could see a change in diet affecting my energy levels, but I had a hard time believing that it was responsible for my rapid heart rate and hand tremors. When my health continued to spiral, I relented and began eating things like plain oatmeal and brown rice again. Predictably, they did not help.
The entire month of December was lost to illness. With each passing day I felt worse and worse. I had to take breaks during my morning commute by stepping off the subway and resting on a platform bench. I was constantly sweating even though it was the middle of winter. Extreme muscle fatigue meant that I couldn’t even make it up one flight of stairs without dragging myself up by the handrail. But I hesitated to go back to a doctor. So far, two of my trusted and long-time physicians had told me that I was fine, that my blood work was normal, and that nothing was seriously wrong.
I looked sick. I was sick. Yet I couldn’t seem to get a medical professional to believe me.
I began to doubt myself. I thought, “Am I really sick, or am I just being dramatic?” I pushed myself to get through finals at school and to make it to work each day, but I constantly backed out of social engagements. I worried that my friends and family were losing patience with me. Did they think I was faking?
I spent New Year’s Eve on the couch with my dog, too sick to go out with my friends. I decided that I needed to try to see a doctor again. I visited a drop-in clinic close to home. By this point, I was so weak that I needed my husband to accompany me for physical support. I had never felt so awful or so scared.
The doctor on-duty at the clinic immediately put me on edge. After a quick introduction, he asked me to list my symptoms. He didn’t take any notes as I spoke.
“I see on your paperwork that you have Graves Disease. That’s probably the issue,” he said.
“Yes, but I had a blood test in November that came back normal,” I explained. This seemed to puzzle him.
The doctor listened to my breathing, and while he concurred that my heart rate was elevated, my breathing sounded clear. He began to look skeptical and more than a little annoyed.
“Well, I’m not sure what I can do for you today,” he said. My heart sank.
“Can you do another blood test, or maybe an x-ray?” I asked. I could not wrap my head around why I would be short of breath all the time if nothing was wrong. He looked at my husband and rolled his eyes.
“Our x-ray machine isn’t even working, so no.” It was then that I started to cry. I really try to avoid crying in public whenever possible, but the sense that I was never going to figure out what was ailing me was overwhelming.
Instead of inspiring some empathy in the doctor, my tears seemed to frustrate him even more.
When there is a preconception that women exaggerate or are “hysterical,” then it follows that they won’t be listened to as carefully as men, or that they won’t be believed.
“Why are you so upset?” he asked. I was astounded that he couldn’t figure out the answer to that one himself, and yet he continued to push. “What’s happening? I don’t understand why you’re upset.” I was crying so hard that I couldn’t even speak. Then he began addressing my husband. “Why is she crying?”
“I’m crying because no one can seem to figure out what’s wrong with me and I’m really sick,” I finally managed.
“Try to calm down,” he said. “Maybe you need to go to the Emergency Room. I think you’re having a panic attack. Has she ever had a panic attack?” he again asked my husband. At this point it became clear that I was not going to find any answers with this doctor. I gathered my things and left.
I looked sick. I was sick. Yet I couldn’t seem to get a medical professional to believe me.
On Monday, I made an appointment with a new primary care doctor. When Dr. S came into the exam room, I finally had a good feeling. She was calm and patient and spoke in a comforting voice. She asked about my symptoms and made careful notes of everything. She asked a lot of questions and gave me a thorough physical exam. She weighed me and I almost fell over when I realized that I had lost 50 pounds since October. I knew my low-carb diet was not responsible for all that. She sat me back on the exam table and looked me in the eyes.
“Your thyroid is hyperactive,” she said with confidence.
“It is? But my last blood test…”
“That was months ago. Thyroid levels change all the time. I could tell within seconds of seeing you that you’re hyperactive: you can’t sit still, you’ve lost a lot of weight, the elevated heart rate, the tremors, the muscle fatigue... I’ll do a blood test, but I’m sure that’s what it is.”
The next day, she called me with my results.
“Your thyroid levels are literally off the charts, sweetheart. You need to be on a lot of medication.”
When we hung up, I sat on my couch and cried, but this time they were tears of relief. I finally had validation. Hormones were coursing through my body and making me extremely ill. In the next months, I would undergo surgery to have my entire thyroid removed. (The surgery took 4.5 hours and the surgeon said my thyroid was the one of biggest he’d ever seen. “I don’t know how you were walking around with that thing in your neck,” he said.) I was a sick person, and yet I had doubted myself and allowed others to doubt me.
In the months since surgery, I’ve discussed my experiences with friends and family. It is astounding how many women relate to my feelings of being unheard or disbelieved by their doctors. They described doctors being dismissive of the severity or even existence of their symptoms. They spoke of being condescended to and, like me, having doctors address their husbands or boyfriends instead of them.
We all came to doubt ourselves and feel like imposters. Many stopped seeking answers altogether, choosing to instead live with undiagnosed illnesses. While it is always difficult to say with complete certainty that experiences like these are the direct result of sexism, I feel comfortable saying that gender bias plays a huge role in the medical care that women receive. When there is a preconception that women exaggerate or are “hysterical,” then it follows that they won’t be listened to as carefully as men, or that they won’t be believed.
As horrible as those few months were, my experiences made me realize that no one can be a bigger advocate for my health than me. When the answers don’t come easy, that is usually when you have to dig deep and keep asking. If a doctor doesn’t believe you, keep looking until you find one who does. You never know what the alternative might be.