Sunday, February 10, 2008

Alexis: Alone No Longer

I have been searching for an explanation for my symptoms nominally since 1991 and in earnest since 1995, when the pain made living in my own body a hellish experience. For years, I heard doctors tell me that "everything is normal" and they "couldn't explain" why I was exhausted, confused, depressed, and in constant pain.

And with no explanation, no one was interested in treating me. Why should they? I was an apparently healthy, albeit apparently depressed, teenage girl complaining of vague and variable pain, constant nausea, confusion, exhaustion, and depression. My primary care physician, convinced I would "grow out of it," never bothered to refer me to anyone, or to prescribe anything other than Valium - which did nothing.

Meanwhile, my peers and teachers were no more useful. From fourth grade through undergrad, I heard almost daily that I was "too sensitive," that I "needed to slow down and relax," that I was a "crybaby," that I was "making it up," and that I was "faking it" to "avoid responsibility." Never mind my near-perfect GPA or my laundry list of accomplishments and honors - I was a "shirker."

The pain was, and is, real. Yet, by the end of high school, everyone who was not living with my pain had convinced me I was just a whiny crybaby. I couldn't, as a recent New York Times article put it, handle "aches that other people simply tolerate." I actually believed other people did "simply tolerate" the kind of pain I lived in; in fact, I even believed the horrible pain caused some people's shocking rudeness. (Imagine my surprise when I discovered many rude people are in no physical pain at all - they're just rude.)

By 2000, I had learned two things: that I was in crippling pain, and that it was somehow my fault. Throughout college I blamed myself for every class I missed, every party I couldn't attend, every meeting I had to skip - so I could sleep, or eat, or curl up on the bathroom floor and cry. Still my doctor did nothing. I graduated summa cum laude, holding the university record for most earned undergraduate credits, and all I could think about was everything I had NOT done because my body stopped me.

It only took one semester of law school before I had had enough. By this time - it was 2005 - I had diagnoses of chronic myofascial pain syndrome, cervicalgia, chronic daily headache, migraine, primary dysmenorrhea, reactive hypoglycemia, irritable bowel syndrome, and TMJ disorder - and I suspected hypothyroidism and MCS. All of these things followed the same pattern. They got worse together; they got better together. I assumed the constant battering from the known disorders caused the constant body aching, the disturbed sleep patterns, the cognitive disabilities, the inability to handle even moderate levels of sensory stimulation, and the chronic nausea. I had no idea those symptoms, too, had a name.

Despite having a new doctor who actually knew how to listen, it took me two more years to shake the ridiculous notions that I was merely "too sensitive" and that the pain was somehow my fault. Perhaps the single biggest help was when my primary care doctor referred me to an anesthesiologist and then a neurologist and a physical therapist, all of whom had the same attitude: "your pain is real and there is something we can do about it." No one - literally NO ONE - had ever told me that before. Some days, I still think it's nothing but a pipe dream.

Having a name for the common link between all my symptoms, that plague I have always known exists and yet have always blamed myself for, has changed my life. The pain is no longer my fault. It's not something to ignore or fight, but to trust and treat. My "perfectionism" and "ambition" are no longer failings, but assets. I am no longer crazy. And I am no longer alone.