How an Eating Disorder Marred My Medical Chart
This article aims to draw a correlation between a mental health diagnosis and a decade of undiagnosed health issues.
At 19 years old, I was diagnosed with an eating disorder. My childhood memories are pocked with distortions. Like when I was six years old, staring at my stomach in my parent’s bedroom mirror, wishing I were smaller. Or again, when I was four, and a few days of the stomach flu made my jeans too big. My mom fastened the button around my waist, but they fell to the ground and bunched around my ankles. I felt a bubbling up of happiness that confused me. Somehow, I developed a need to take up less space.
Even at nineteen, I wasn’t ready to cut ties with disordered eating. I was ready to cut ties with exhaustion, depression, and loneliness, but not my obsession with weight. I felt that I needed to be thin to be loved, accepted, and wanted. My mandatory therapy appointments didn’t bring me a sense of consolation. Everything felt like turmoil. My relationships were called into question, my background, and my parents. I didn’t feel a sense of relief yet, but it was coming.
Over time, I had positive experiences with friendships, people, and opportunities that eventually led me down a healing path. It was a slow walk, not a sprint toward freedom.
When I moved to Europe in 2015, the pressure to perform and be beautiful lifted. I felt beautiful simply by existing in my new world. To this day, I can’t quite put my finger on what changed between my home and my new home. The only difference I know for sure was the sense of time.
I had been circling the drain before I moved abroad. There was an imaginary timer nearing zero, but I hadn’t even begun to play the game; Yet, time slowed down when I moved at 23. I wasn’t trying to beat the clock anymore, which made room for me to expand into my own person with my own ideas and dreams outside of the plans given to me by the community who raised me.
The Same Tests Repeated
As time passed slowly, I began to notice the imbalances in my body. I would attend medical and dental appointments back home twice a year during my visits. I made lists of symptoms that seemed important to address before flying thousands of miles away. The most consistent note I made concerned my periods. They were too inconsistent, yet I had PMS too frequently. My PMS was painful and heavy, leading to migraines, inflammation in my lower back, and severe nausea. It pulled me away from my day-to-day life.
Most concerningly, my PMS led to major depressive episodes that started to scare me. I could go from energetic and content to exhausted and suicidal within hours.
Each appointment with my doctor would result in a blood panel for amenorrhea, which I had become familiar with since my ED diagnosis. Amenorrhea is the loss of a menstrual cycle due to menopause, birth control, stress, or malnourishment. Amenorrhea is common among women who suffer from an eating disorder.
I’ve been tested for amenorrhea once a year since my ED diagnosis, yet, I have never been diagnosed with amenorrhea. Instead, my doctor has given me printouts on supplements to help with PMS symptoms, including magnesium. She handed me the printout with an apology written on her face. She knew it wouldn’t help, but for some reason, we were at the end of the road after one blood panel.
As you do when you can’t find answers, I got on with things. More symptoms popped up, and I’d flag them with my doctor. She’d asked about my therapist; I would confirm that we still meet. That would be that.
Questioning Myself
Then, in 2020 and like the rest of humanity, I lost my appetite. For two years, I consistently asked my doctor for help with my hunger. My bodyweight seemed to be slowly rising, but my appetite was decreasing. I was never hungry and often too full too quickly. I didn’t feel I was suffering from my previous eating disorder, though old habits began to come back at times. My lack of appetite concerned me, but it took many months before a fear of eating surfaced. I noted both occasions to my doctor. She asked me if I was still talking to a therapist, and I was. There was no further discussion of my concerns.
My symptoms could be summed up with my previous eating disorder diagnosis except for one: My previous self would never have asked my doctor to help me get my appetite back. My doctor always had an excellent bedside manner and would often call to give me my lab results as soon as they came in. Because my doctor was so astute, it became increasingly difficult to believe myself. Maybe it was all in my head, and I wasn’t experiencing these symptoms. More troubling, perhaps it was my eating disorder, and I was blind to it.
I was at the end of my rope when I met with a functional medicine doctor. I get wary anytime I hear anything about being gluten-free or having a leaky gut. I was apprehensive during our meeting but desperate to gain control of my life again, enjoy meals, and feel energetic.
A Different Way Forward
My new functional medicine doctor listened to me recount my medical history. First, we spent hours going through old blood panels and documents from my primary care physician. Then, in hour two, when we got around to my menstrual history, she was shocked by what I told her, especially about how depressed I was during PMS.
We began exploring my hormone levels through alternative testing that general physicians don’t do. Each test was $350 and did not cover the fee for the practitioner’s time or our appointment to talk about strategies moving forward. I needed at least three of the tests for a complete profile, but I could only afford one.
Now, I wait and hope that those little paper strips I peed on tell me more about the extremes in my menstrual health and cross my fingers that this test can also divulge answers about my appetite.
This article was inspired by the New York Times article Women Are Calling Out ‘Medical Gaslighting.’ While my story is still stuck on its ending, I learned a lot from the women in the NY Times article who expressed frustration and hopelessness in America’s medical system. The comments section further affirms our truths. Each time a woman says “me, too,” there is a powerful echo and a chance for revolution.
Let’s hope medical schools, doctors, nurses, and medical researchers hear the echo and reverberate with a determination to change. I hope my story of frustration reminds someone else they are not alone. May we each have the perseverance to keep moving forward toward answers, remembering we are worthy of taking up space. We are entitled to receive complete medical evaluations and have our voices heard.
