My chronic pain never stops being interesting to me. If someone were to ask about my health, I could provide them hundreds of updates about today alone. The way my brain felt like it was bouncing in my skull when I walked down the hall to put my dishes away. The way looking down at this computer pulls painfully on my middle back. The way I felt the shower walls sway this morning and crouched on the floor so that I was even lower to the ground than my shower stool, in case I fainted. The way my toddler Khalil, sitting next to me in bed, my left arm wrapped around him, caused shooting electric nerve jolts to run down my body. The way that, while attempting to make it to the car for a 9:30 am appointment, I experienced wave after wave of consuming clamminess, vertigo, and nausea that eventually drove me back inside.
I can’t remember a time without daily pain but my health worsened dramatically when I was 28. My migraines and back pain, which had been manageable, exploded into volatile neurological symptoms. One day I was a runner and business owner and the next, August 23, 2011, I couldn’t get out of bed.
I stopped working, went from running most mornings and seeing friends most evenings to barely leaving my bed, and spent months shuttling between dozens of appointments with dismissive doctors. I felt as though my body was disappearing, beholden to chronic pain.
After two years, I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS), a dysfunction of the autonomic nervous systems which regulate heart rate, blood pressure, temperature, and digestion. I’m chronically dizzy. Regularly nauseous. Unable to tolerate heat.
A year after my POTS diagnosis, one of my sisters suddenly developed the same symptom constellation, so we visited a geneticist together. We were both diagnosed with Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder that alters the makeup of collagen, an essential component of skin, tissues, blood vessels, and bones. For reasons not fully understood, POTS is a common complication of EDS. The possible symptoms of both are extensive and far-reaching and, almost always, very uncomfortable.
When my husband David asks about my day, I’ll tell him about the books I read, friends I spoke with, and essays I wrote, but really, most of every day is devoted to the management of physical needs, experiences, and discomfort. The careful calibration of salt, water, food, rest, movement, temperature, meditation, purpose, and connection. The endless search for a comfortable position in bed or on the couch. The consideration of necessary routine or treatment changes.
Sometimes I don’t tell him the whole truth because I’ve lived it all day and don’t want to relive it with him. Sometimes I stay quiet because I don’t want to make him sad. He loves me—he hurts when I hurt.
When asked about my pain, I could describe the way I have worried about the future today: If I’ll be able to leave the house soon, if my symptoms are indicative of a spinal problem that will need to be solved surgically, if the disability payment renewal forms are being processed or if I’ll lose my benefits.
I wish I could tell people in the moment how I’m feeling. I don’t exactly understand what compulsion prevents that. I have a few friends with whom I can be honest; while in conversation I stop and shut my eyes and say hold on a second, I’m dizzy and need to rest. With most people I just keep smiling and listening, fighting against an overwhelming urge to cry or panic or sleep.
Sometimes it’s simpler to talk about the activities that illness prevents than the actual experience of illness—maybe because it’s easier for a healthy person to imagine losing something they have than feeling something they have not experienced and would prefer not to imagine. Trying to relate a corporeal experience that someone has not had is difficult. Alphonse Daudet, a French novelist who spent his final years suffering from syphilis, described talking about illness perfectly: “Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me.”