The summer before my senior year of college, I made an appointment with my mom's podiatrist. I'd been feeling a sharp pain in my right foot whenever I took a step, but I worked at a gym and frequently ran for exercise, and I figured I'd just been overdoing it. The doctor said he was sorry to tell me this because I was so young, but my x-rays showed that I have arthritis. He wrote me a prescription for some orthotic inserts he recommended I start wearing, which would only fit in certain shoes (not the cute ones). I'd just turned 21.
A month later, I started experiencing other unusual symptoms and odd discomforts that made my body look and feel older than it was. I was constantly nauseated and most everything I ate made me feel sick, yet I was steadily gaining weight. I'd been catching colds and upper respiratory infections every two months, had splitting headaches that kept me in bed all day, and every step I took felt like I was walking through thick, heavy sludge. My scalp was flaky and my hair was falling out.
I felt like pure shit, and I was depressed. I figured my nightly routine of watching TV and eating cheese until falling asleep at 7 pm—then waking up at 4 am to scour WebMD for some sort of explanation for what I was feeling—was finally catching up to me. I saw different doctors, headache specialists, allergists, and by all accounts, I was healthy and fine. No one pointed out that being a 21-year-old with arthritis was unusual, or that it was a symptom of a bigger problem.
My stomach problems worsened until I could barely eat anything without throwing it up. My sudden, throbbing, headaches were so bad I was convinced I was dying, and I'd been in and out of my nearest late-night urgent care office so many times they knew me by name. Eventually, I visited a new doctor, who decided I should have some blood tests. It turned out that my thyroid hormone levels were extremely low, and I tested positive for Hashimoto's thyroiditis. Basically, my thyroid gland was underactive and attacking itself.
My doctor wasn't really able to explain why this was happening, but she prescribed me levothyroxine, the synthetic thyroid hormone pill which she explained I'd probably have to take for the rest of my life, and sent me on my way. Aside from her recommendation for bi-annual checkups to test my thyroid hormone levels, my doctor didn't seem very concerned, so neither was I, though I still didn't understand why or how I'd ended up with something I'd really only heard older people talk about.
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Hashimoto's thyroiditis is an autoimmune disorder that causes inflammation of the thyroid gland, and is the most common cause of hypothyroidism. Thyroid disease is typically diagnosed by blood tests that measure thyroid hormone production and test for antibodies against proteins found in the thyroid gland. Symptoms vary and they're often vague. They can include dry skin, depression, gastrointestinal problems, fatigue, weight gain, hair loss, sensitivity to cold, and "myriad other symptoms" that are "often not addressed, or done so in a disjointed fashion," says Michael Arata, a Newport Beach, CA-based integrative medicine physician with a specialty in interventional radiology and chronic illness.
Sascha Alexander, a Los Angeles-based holistic health and wellness coach and an autoimmune patient herself, explains that symptoms often appear as "relatively benign complaints…those most easily disregarded as just 'life stuff' like headaches, fatigue, weight gain or loss, depression, anxiety, chronic infections, or joint pain. It can be years before they are taken seriously." She says it's especially problematic for young people, who appear, by all accounts, "beautiful and healthy." She adds, "For nearly 20 years I was told my symptoms were in my head, or that I was simply 'not exercising enough' or 'not eating well.'"
"Young people, and especially young women, with these symptoms are often told that they are lazy, out of shape, overreacting, and 'just' experiencing anxiety or depression," says
Erica Lupinacci, co-founder of Suffering the Silence, a non-profit organization dedicated to raising awareness and breaking the stigma surrounding chronic illness. She's had a similar experience to Alexander.
Though Hashimoto's occurs most commonly in middle-aged women, the disease can appear in people of all ages due to a combination of genetic and environmental factors, like stress. According to a 2009 study from the journal Psychosomatic Medicine, an accumulation of childhood stress can also trigger and increase the risk of developing an autoimmune disorder as a young adult. But because my difficult childhood was also a factor in my depression and mental health issues, and depression is also a symptom of my autoimmune disorder—it's hard to tell where one problem ends and another begins.
As Arata tells me, that autoimmunity leads to inflammation, which puts patients at risk for developing additional autoimmune disorders. One autoimmune disease can potentially become another and another, Arata says, meaning more doctor's visits and more time feeling ill and searching for a diagnosis, so autoimmune conditions can be incredibly costly. "This is in actual dollars spent per person, but more importantly quality of life," he adds.
For people my age living with autoimmune disease, chronic pain, and fatigue disorders, there are good days and bad days. I'm on medication now, but I still look and feel extremely tired and creaky and my body hurts a lot of the time. My heavy, frequent brain fog makes it hard to stay focused when I'm having a conversation and essential tasks like getting out of bed, putting on clothes and leaving the house for an hour often leave me wiped out for the rest of the day.
Looking healthy but feeling awful is hard to explain to most people in general, but especially friends, coworkers, or significant others in their 20s who might not understand that a night out for me—if I have the energy—usually means a week spent recovering from that very night out. It's not fun or sexy to have to explain to someone that I can't be out late because I'll be tired in a way that feels far beyond hangover haze. And when I don't feel well, reminding people I still exist and want to be invited out is its own challenge.
"When you are in a flare everything stops. Even walking, breathing, eating, and traveling become impossible. But during those times, people…simply don't see you. You're home from work, you're saying no to social events. It can create an illusion of wellness to an outside observer that is entirely inaccurate," Alexander says. "It's an isolating and invalidating experience for a young autoimmune patient. They are forced to constantly ask [themselves], 'is this just in my head?'"
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