When knowing something is worse than knowing nothing

Antinuclear antibodies. Autoimmune. I thought they were terms from contrived Hollywood procedurals to make the characters sound smart, words worth dismissing alongside the rest of the medical-school jargon I overhear in hospitals or read in news articles posted on the wall at the internist’s office.

Now, in some poststructural mockery of my own life, of my own beliefs, those words play hegemon over my mind like the Bratva over Moscow. Language has become reality. Who I am, who I was is lost.

Antinuclear antibodies. Autoimmune. I thought they were terms from contrived Hollywood procedurals to make the characters sound smart. Now, those words have become my reality.

For almost a decade, I have bowed to no god in heaven or earth, sworn allegiance to no flag but my own, obeyed no master but myself. I now supplicate to some being I cannot hear, I cannot see, wondering what a handful of numbers mean.

My last blood tests showed my antinuclear antibodies exceed thirty times the normal range. An indirect fluorescent antibody test returned a speckled pattern. My rheumatoid factor—another antibody test—is elevated.

My breaths are shallow. My chest is tight. My arms, legs, and chest are covered in rashes. Sunlight is either the cure or its burning me from the outside in, and I, like the biblical Job, cry “Violence!” to a god I do not believe in; I hear no answer—not from Jehovah, not from my doctors.

My internist suspects lupus or some other mixed connective tissue disease. My dermatologist believes I have dermatomyositis. Both say I need more tests.

Antibodies are proteins produced by the body in response to foreign substances—for example, viruses, bacteria, toxins. Antinuclear antibodies (ANAs) are produced when the body fails to adequately distinguish between what cells do and do not belong. Though healthy bodies can and do produce ANAs, more often, high concentrations of ANAs indicate an infection, most often, an autoimmune disorder.

I now wait with just enough information to make me anxious, paranoid, afraid, hopeless, depressed, but not enough knowledge to move through Kübler-Ross’s remaining stages of grief.

I spend too much time online reading about these diseases, wondering why I have them and from where they come. I am a sinner in the hands of this enigmatic twenty-first-century god, this omniscient being we call the internet, this entity with all the answers. I search website after website, looking at prognoses, forecasting my future. I see no answers.

My chest x-rays are negative for any lung disease. My electrocardiogram (ECG/EKG, depending on how much Greek you know) was completely normal. I try to focus on these positives, but I wonder if I am just bargaining. Grief stage two.

I speak with my girlfriend, with my parents, with close friends, with my therapist. I let some of my coworkers in on my news—after all, they need to know why speaking has become tough, why some days are more exhausting than others, why I keep leaving for different doctors. All are encouraging. They assure me modern medicine always has a cure (or at least a treatment).

But does it?

I try to remain positive. But at what point does optimism become denial?