My Diagnosis Story, Part 1
I was first diagnosed with lupus, an autoimmune disease when I was 22. But like many people with invisible illnesses, it took a long time to finally figure out why I felt so sick.
In 2009, I had moved across the country to Hartford, Connecticut for grad school. I spent my days practicing viola, studying pedagogy, and hanging out with friends at the Spigot or the Wooden Tap after rehearsal. I wasn’t homesick. Big life changes energized and excited me, like an adventure. Sometimes I don’t think I’d mind moving to a different city and starting over every 5 years or so.
Onset of lupus symptoms
Around the middle of my first semester, I started to feel really tired all the time. I started taking vitamins and sleeping more, but the fatigue was like a shadow that I just couldn’t shake.
There were other physical changes, too. My roommate had started to complain that I was losing a lot of hair and clogging the shower drain each week. I started to feel nauseous in the mornings and after eating, which made me want to eat less. I started losing weight.
Despite logging lots of hours in the practice room, I wasn’t doing well in school. I lost or forgot to turn in assignments. Simple tasks like putting on makeup or getting dressed in the morning suddenly weren’t so simple anymore. One morning, I kept trying and failing to make instant oatmeal in the microwave. I forgot to add the milk and microwaved dry oats, which came out just as cold as I put them in. Then I added milk and forgot to microwave it. What had once been a basic task confused and frustrated me.
Driving was challenging, too. I had once been able to practice difficult scales and pieces for hours without interruption. Now, my concentration was so poor I didn’t even notice when the light turned green, although the drivers behind me were quick to remind me.
Unbeknownst to me, I had developed an autoimmune disease and my immune system was busy attacking my brain. My lack of concentration and my confusion about everyday tasks were common to lupus patients, who often called this “brain fog.” But because I experienced none of the typical symptoms- my joints didn’t hurt and I didn’t have any rashes or sores- it would take my doctors nearly a full year to figure out what was wrong.
A handful of chocolate-covered espresso beans and a few cups of coffee consumed one evening jolted me out of my mental fog. Suddenly, I felt like myself. I learned 2 things in that moment:
- I realized I hadn’t been feeling like myself all semester.
- Never underestimate the power of a strong cup of coffee.
Dismissed by doctors
The next day, I described my symptoms to the first doctor with an opening at the clinic down the road from my university.
"I’m always tired. I keep forgetting things. My mind feels fuzzy. I-..."
He waved his hand dismissively. "You're not sick. You’re stressed. When you check out, my nurse will give you the number of a psychologist friend of mine."
This was my first experience with being overlooked by the medical system. But it was unfortunately not the last.
I was tested for Lyme, hypothyroidism, and pregnancy. I was told I was bipolar. I was told I probably smoked too much pot like “all those college kids these days.” The terms “depression” and “hypochondria” were tossed around.
For many patients with autoimmune or other invisible illnesses, being treated with suspicion and skepticism and told they "don’t look sick" is a common introduction to the medical system. While we like to believe that doctors have all the answers, the reality is that bias and ignorance within the medical industry damages and traumatized many women, especially women of color.
I would see 7 different doctors before someone thought to test for lupus.
Have you submitted a bonus entry for our awareness month giveaway self-care basket?