Doctors Gaslit Me for 10 Years—Here’s How Finally Getting a Diagnosis Changed My Life

I was sitting in an all-too-familiar exam room with crisp white walls and fluorescent lights, anxiously shifting on the crinkling paper on the exam table. I always wondered if those thin sheets of coarse paper really did protect me from any lingering germs as I waited for my lab results. Bloodwork that would read the same as it did every three months for the past five years and would lead to the same surface-level diagnosis: anemia.

I received this diagnosis from my primary doctor and even got a second opinion. It was the way they delivered the news that I could never quite accept. I never breathed a sigh of relief, never experienced the weight of the unknown finally lift from my shoulders. Instead of saying the definitive “You have…” they could only provide me with “It seems like” or “It’s probable, but I can’t say for sure.”

Another three months would pass, and the cycle would restart. Infrequent full-body numbness, followed by my legs collapsing beneath me and waking up on the floor in a daze, only to be told by a stranger in a white coat that they’d have to see it to believe it. Off I’d go with a prescription for over-the-counter iron pills with the hope that somehow they would work this time—desperately holding onto the last thread of trust I had for my doctors, even if my gut told me otherwise.

I had been searching for years, and all they could give me was “Probably.” Their misdiagnosis was usually followed by conversations about my symptoms not occurring frequently enough to raise the alarm and not being “severe enough” (aka during in-office testing) to warrant extra tests. I know that there are millions of people with life-altering medical conditions that take precedence over mine—but to be told that I essentially had to perform a circus act and faint on demand in front of the doctor to be taken seriously was ridiculous.

How I lived with a misdiagnosis

I was 19 years old in my first year of college, working toward my degree in multimedia journalism. I had just survived six months back home in quarantine, away from my college life just one semester after it began. Most days were normal. I attended class online, spent time with my new boyfriend (now fiancé), and discovered a passion for cooking during quarantine.

I was happy about all the new experiences that college life offered me. But it was the days when standing up from bed, going to a workout class, or simply existing would lead to spells of dizziness and sometimes fainting that cast a lurking shadow on my life. My misdiagnosis loomed over me, and I still didn’t have answers. For a while, all I could do was brush my condition off as a not-so-serious quirk, ignore its existence, and learn to mold my life to accommodate it rather than continue searching for a solution.

“Off I’d go with a prescription for over-the-counter iron pills with the hope that somehow they would work this time—desperately holding onto the last thread of trust I had for my doctors, even if my gut told me otherwise.”

At the age of 21, my “episodes” evolved from once-a-year moments to occurring multiple times a month, usually without warning. My parents began to worry about my health—the distance between us, while I stepped into my new independence, felt even larger because they weren’t there to help me if something went wrong. Even my fiancé grew concerned during my unexplainable episodes when I would have to collect myself before carrying on with daily activities like standing from the couch to pop a bag of popcorn for our weekly movie nights. But it was one night in my college apartment that convinced me to take matters into my own hands.

The moment I knew I needed to find answers

I was in the shower when suddenly I felt a cold stone along my side, and my lungs filled with heated steam. The rush of the shower rang in my ears, and my head pounded in pulsing pain. I took my time to recollect myself, taking in the scene of the fallen curtain and purpling bruises. Then, bursting into tears, I realized I had fainted (again), fallen out of the shower onto the bathroom floor, and hit my head, all with no idea how long I had been out. The scariest part—I was utterly alone.

I wasn’t crying from pain, but I sobbed from the terrifying realization that my misdiagnosis had now led to, albeit minor, painful injuries. That day, I decided to take matters into my own hands. Turning a blind eye to my condition was no longer an option. So, what did I do? Exactly what any other sane college student who’s afraid to make her own doctor’s appointment would do: I spent weeks WebMDing my symptoms to no avail. Not my best decision, but after convincing myself I had 12 different possible rare diseases and perhaps some undiagnosed anxiety, I received an out-of-the-blue call from my sister that would point me in the direction of a potential solution.

“Why couldn’t other doctors have listened so I could get to this place 10 years ago? What would my life be like if I had answers sooner?”

My sister is a physician’s assistant. Out of our other siblings and I, she is the most informed person on our family’s medical history. A few months after my shower episode, my sister told me that she experienced symptoms that led her to get tested for Thalassemia. It’s a genetic blood disorder that can cause anemia amongst other symptoms. I had never heard of it before, but after a few Google searches, my heart raced as I skimmed across a list of symptoms that came extremely close to my own.

I’ve never booked an appointment to see the doctor so quickly! I went to a hematologist since one of the main factors in diagnosing thalassemia is the hemoglobin count in the blood. At the age of 22, a decade after I first started showing symptoms, I went to one hematologist appointment and finally got my answer. After years of blood tests, lots of iron pills, and fainting in front of the hematologist while getting my blood drawn (yes, it finally happened), I was diagnosed with having the genetic trait of Thalassemia.

Thalassemia is a blood disorder that prevents the body from producing hemoglobin, which carries oxygen through the body to all organs. It is genetically inherited with one known treatment option. The treatment is a very high-risk procedure and typically only an option for those patients on the higher end of health risk. My diagnosis is categorized as a lower-level risk and should allow me to lead a normal life as long as I stick to a healthy lifestyle. In other words, my diagnosis will forever place me in my healthy girl era. If it means knowing the cause of my symptoms, I am more than okay with that.

How my misdiagnosis forced me to grow

At first, it was a major relief, but it was also a time when I felt the weight of distrust in the medical system because of my misdiagnosis. Why couldn’t other doctors have listened so I could get to this place 10 years ago? What would my life be like if I had answers sooner?

I imagine I would not have had the fear of living alone in an apartment. I’d be able to experience the early adulthood wonder of decorating a space that was solely my own. I may have done more physically strenuous activities without fear of fainting, like going hiking with friends or going on longer kayaking trips with my dad. Life could have been different—but given how lucky I feel to have a diagnosis now, I try not to dwell on it.

Although disappointed in the lack of quick fixes for my symptoms, I am incredibly proud of myself for curating a lifestyle that has transformed my health—my life is so much more stable now than it was in the midst of my misdiagnosis. Taking control of my own health has been incredibly empowering. I now have a label I can insert into conversation when new friends become close friends and inevitably experience one of my episodes. I have a keyword to add to my medical papers and lay my WebMd misdiagnosis nightmares to rest.

Not only did I get myself to the appointment that would lift 10 years’ weight from my shoulders, but I have researched foods, exercises, and daily holistic lifestyle choices to ensure my once severe and scary episodes have dialed down to the occasional minor dizzy spell. Some days are better than others, and it takes a lot of discipline to keep up with my healthy lifestyle, but it makes me feel my best, and I got myself here. To me, that’s the most important part.

“If I could speak to my 19-year-old self and give her the insight that I now have four years later, I would tell her that I’m proud of her for taking her health into her own hands.”

When I went to college, my goal wasn’t only to gain a degree but also to gain independence from my parents. In the beginning, I naïvely thought that independence would only mean buying my groceries, cooking dinner, and paying rent every first of the month. I quickly learned that these acts only scratch the surface of what it means to be a “real” adult—figuring out my own health was a daunting task when I was still a “teen.” Independence rapidly became a bit-off-more-than-I could-chew scenario when my symptoms worsened, but I’ve since given my younger self grace when looking back.

If I could speak to my 19-year-old self and give her the insight that I now have four years later, I would tell her that I’m proud of her for taking her health into her own hands. I would tell her that it’s OK to rely on other people (especially your parents) to get through life’s rough patches and that seeking a second or even third opinion is always the best course of action when struggling with a misdiagnosis. Since I first started seeking answers for my symptoms, I’ve learned that “healthy” is a term unique to each individual. Now, I’m “healthy” in multiple senses of the word: I’m physically better, but I also have learned to communicate and advocate for myself. It’s a lesson I know I’ll use for the rest of my life.

Now, I no longer sit on the crinkling paper in doctor’s offices, waiting for a diagnosis. Instead, I sit across from specialists who are well-informed about my diagnosis—I feel like I have a voice in my own health journey. I spend my free time honing my newfound love for cooking and utilizing food to heal my body. I can exercise alone without fear of fainting at the gym, say yes to a night out with friends without hesitation, make all my doctor appointments, and best of all, I can take care of myself.