This article is part of Health's new series, Life Interrupted: Living With an Invisible Illness. One women will share what it's like to appear healthy on the outside while navigating daily life with a serious physical or mental health condition.
The pain started when I was 16 years old. It began in my finger joints, the aching dull one moment and sharp the next. Soon the pain became more widespread. It circumnavigated to what seemed like every joint in my body. (Later I would learn that these were tender points surrounding the joints rather than the joints themselves.) Every time I took a step, I felt a sharp jab in response.
I was a high school junior in New York. The SATs, AP classes, school sports, the school musical, and college counseling took up the majority of my time. I ignored the pain because I simply didn’t have the energy or time to deal with it. When I allowed myself time to focus on it, I would turn to Google. These late night symptom-checking sessions usually left me convinced I was about to die. I told my parents that something felt wrong, but they shrugged and told me to go to the doctor.
In and out of waiting rooms
The first time I explained my joint pain to the family doctor I'd been seeing for years, I said that I thought it might be arthritis or leukemia. (At least, that’s what Google had told me.) My doctor wasn’t so sure. He told me I was stressed and needed to relax. He asked me if I ever felt depressed or anxious. I nodded, even though a large part of my anxiety stemmed only from my unexplained pain. He sent me away with a Zoloft prescription and didn’t recommend any specialists.
I’m not sure why doctors seem to prescribe Zoloft first. Whenever I talk to friends who have also been prescribed SSRI antidepressants, we exchange dark glances, remembering our first trial runs on Zoloft before we found the prescriptions that actually worked for us. I can still remember the constant feeling of electricity coursing through my head, the way the drug made me fixate on certain things rather than allow the anxiety to fade away. I lived like this for over a year.
All the other physician visits I went to seemed to blur together. I remember going to one with the same complaint I had for my first doctor, and he told me it was due to stress. He patted my shoulder and wished me the best of luck with my college search. He was kind, but he clearly thought the pain was in my head. I insisted on tests—for Lyme disease, blood work—anything that would tell me what was wrong with my body. They all came back negative.
I went away to college in Boston. During my first semester, I took the train back home twice to see my doctor. The pain was now so bad, I was unable to sit in the library to study without being assaulted by aches. Google searches worried me, as these symptoms—combined with the headaches, fatigue, and insomnia I was now experiencing—led me to believe something serious was going on. I went into my doctor’s office again and again feeling like my body had betrayed me.
Finally a diagnosis
The next year, I transferred to the University of Virginia and was now farther away from my hometown and doctor. I called him a few times on the phone with complaints, but ultimately the rush of new experiences at school distracted me from the pain, even though it was always there in the background.
I didn’t tell most people about the pain that followed me daily. This was probably because I didn’t want to seem weak or pitiable, but also because I refused to give it a name or a voice. If I didn’t acknowledge the pain, I reasoned, then maybe it didn’t exist after all. Maybe it was, as my doctor kept insisting, just stress.
One fall, an ex-boyfriend convinced me to wean myself off Zoloft. My anxiety was getting worse—enough to noticeably affect my relationships and friendships—so I agreed that a change in medication might be a good idea. I went to my doctor’s office that winter break.
As I sat perched on the chair in his exam room that December day, I remember him asking me more questions about my anxiety and stress levels. He applied pressure to my joints and asked where the pain was located. Eventually, he sighed and said it looked like I had fibromyalgia, but he had not suspected it before because I was so young.
What is fibromyalgia?
The word was long and unfamiliar. Fibromyalgia. I didn’t even know how to spell it.
What I later found out, though, is that fibromyalgia is an elusive and confusing diagnosis. The condition is thought to affect the way the brain processes pain signals, amplifying their intensity and thereby causing chronic, debilitating pain, according to Mayo Clinic.
Fibromyalgia also mimics many other conditions, including arthritis, lupus, and cancer, which is why it often takes years to get a diagnosis. There's no definitive test for it; it's diagnosed by a process of elimination when other conditions are ruled out. For years, it was even considered a mental-health disorder. It was only in 2007 when medication became available to treat symptoms and side effects. (Fibromyalgia currently has no cure.)
My doctor told me that I was one of 3.7 million Americans living with the condition, the majority of which are middle-aged women. He didn’t know why fibromyalgia affected me, especially since I am decades younger than the average person diagnosed. Though fibromyalgia may be genetic, no one in my family has it. It might also be caused by physical or emotional trauma. Yet at the time I developed it, I was in high school, living a relatively carefree life of dancing in my school musical, running to soccer practice, and studying for the SATs.
How the disorder affects me day to day
My doctor prescribed me Cymbalta to treat both my pain and my anxiety. I remember walking to a pharmacy not believing that a drug could combat the constant aching I felt in my bones and the cloudiness that swept my brain like a fog combing over a valley. But after weeks of taking the medication, the stabs of pain became less and less frequent, and my anxiety much more manageable.
This is not to say that fibromyalgia doesn’t still affect me daily. During the week at my job in Manhattan, I'll draft e-mails with aching finger joints. On a Friday night, my friends and I will be heading out the door, and suddenly I’ll feel a sharp stab in my arm. I’ll try to ignore it, but the pain will pulse and spread throughout my body. I’ll make an excuse, say something about how I need a self-care night, and soak in a hot bath to relieve the pain. I’ll keep up with what my friends are doing on social media, unable to partake myself.
Some nights, I might find myself lying awake for hours due to insomnia, rising in the morning with heavy eyelids. Weeks later, I’ll stand in the pharmacy line waiting for medication. I’ll hand over my debit card and flinch when I see the cost of the refill. Even though I have great insurance, the price for a reduction in pain is always too much. Sometimes I don’t understand why the pain is there in the first place, and I wish more than anything that I could detach myself from my body, just a moment.
Yet, despite all this, there is a peace that comes with knowing what's ailing my body. I now know what pains, aches, and fogginess are; they have a name. After years of searching for an answer, knowing I live with fibromyalgia and what that means offers a sense of comfort that I didn't have before my diagnosis.
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