How A Misdiagnosis Almost Ruined My Life
There were 10 minutes left. I was taking an exam that required proving five mathematical statements in 50 minutes. I was in panic mode trying to remember things that were just outside my mental grasp. I could feel the tears starting. I knew I was going to fail again and that deeply frustrated me. I had put in at least 20 hours of studying for this test. I had gotten A's and B's on all of my homework, I had attended every class and still nothing was coming to me. It was as if I knew exactly what I was looking at and yet nothing about it at the same time.
It took about two weeks of college to crush my academic dreams and two months to make me ill. It didn’t help that for my first two and a half years I had an autoimmune illness that presented itself as a mental health condition.
All of a sudden I was really terrible at taking tests. It was as if my brain couldn’t process the information fast enough and my memory recall became fuzzy. I had trouble placing what was wrong because I had convinced myself that I really was just the worst at everything even though all of my other work pointed to the contrary.
It was a whole year before I had a professor who recognized that my situation was not normal. He had students that had failed his tests come to office hours to go over everything and make a plan. As someone who had failed, I had to meet with him.
I was very apologetic and went on to explain everything I had done wrong. He seemed puzzled, as most students who failed tests didn’t come into his office knowing the correct answers an hour after getting the test back. He then took a closer look and noticed I got the hardest question right.
“I don’t understand why you failed this test,” he said.
“Neither do I,” I replied. And all of a sudden it was like I wasn’t crazy, and I really did have a legitimate problem. He got in contact with the disability office to explain my situation; they decided to see if more time on tests improved my grades. I aced the next test.
It was then up to me to get a diagnosis in order to keep getting more time on tests. So I found a psychiatrist. His credentials included having an M.D. and an office located across the street from my apartment. After weeks of taking tests, filling out questionnaires and going through everything with him, he told me he couldn’t find anything wrong that would explain my issues.
He did, however, focus on my obsession with needing clean hands before handling food and decided that I had OCD. He told me that I must be so obsessed with getting right answers that I simply didn’t finish in time.
I started crying; I felt like he hadn’t listened to what my actual problem was. This diagnosis didn’t explain my slow processing time or memory recall issues. He waved off my concerns by telling me I aced all the tests he gave me. Unfortunately for me, simple math problems didn’t compare to having to write five high-level mathematical proofs in 50 minutes.
But as much as I knew I didn’t have OCD, at least not enough to require a diagnosis, I gave in because all I needed was some diagnosis in order to get more time on tests, and if I wanted to succeed, I needed that time.
Two months later, I started having physical symptoms. At first I thought it was a bad case of anxiety. I had a stabbing pain in my stomach and had lost my appetite. It was midterm season, after all, but my symptoms didn’t go away when the stress went away. It also took me a few months to recognize that I had also started sleeping way more than normal and was always tired.
It took six more months for a proper diagnosis. After seeing two primary care physicians and two gastroenterologists, I was diagnosed with a poor functioning gallbladder and gastroparesis, but those weren’t my underlying problems. It took the triggering of a separate illness and a new doctor who ran all kinds of blood work on me to finally get the diagnosis of Hashimoto’s thyroiditis. After a month of taking Synthroid, a medication to help thyroid function in individuals with an underactive thyroid, all of my physical symptoms due to my thyroid were mostly better. And finally, I had an illness that explained what was going on in my head.
My psychiatrist hadn’t even considered that I had an autoimmune illness. He even seemed to mock me when I questioned his diagnosis asking, “Well what do you think you have?”
Not considering an autoimmune illness myself, as I wasn’t a doctor, I said, “Well, ADD runs in my family.”
He told me I tested negative, which to be honest I had expected.
But then I suggested that it was possible I had high functioning Asperger’s because after all of my research it was the closest explanation I could come up with. He told me that was impossible; I could make eye contact and hold conversations well.
And that right there told me how incompetent he was. He didn’t even know that females were less likely to have those symptoms and didn’t believe me when I told him. And not believing me was the worst part.
I was a woman of color who was young and looked even younger. How could I possibly know anything? I can’t seem to shake that if I were a middle-aged white man, a peer to my doctor, maybe he would have taken me more seriously, because misdiagnosis is one thing — openly not listening to your patient is another.
When I first started having symptoms, I doubted myself, but after someone else noticed them, I had at least some clarity in knowing that something was wrong. Now, whenever something feels off, I don’t hesitate to seek medical advice. If it ends up being not much of anything, no harm done, but if I were to ignore it and it was something, then I end up being the one paying for it. So if a doctor doesn’t listen to me and pay close attention to my concerns, they will lose my trust, because they clearly don’t trust me to know my own body.