We seem stuck in preschool when dealing with pain. In doctor’s offices right now, we are still pointing at numbered emoticons—round smiley faces that turn to frowns and then tears—to rate our pain level. You don’t know how badly I wanted to have a pain tolerance test—hook my skull up to electrodes and put my hand in a vice—so we could both know what my pain tolerance is and what my pain level means. So I will be believed, perhaps even respected, for what I am battling daily.

My pain began as result of a rampaging immune system that attacked my blood, liver, brain, heart, lungs, and kidneys: systemic lupus erythematosus. A teenager alone in a hospital room far away from family and friends, I asked a doctor how long I had to live. He said if the disease continued to progress—4 years. I believed him. My own godmother lost her daughter at age 14 to lupus. Back in 1977, lupus patients with blood, heart, liver, brain, muscle, and joint involvement didn’t live long after their initial diagnosis. Perhaps the fact that it took most patients-years to get an accurate diagnosis contributed to that high mortality. In fact, my doctors had to do an about-face from searching for an infectious agent or parasite, to looking at lupus.

Lupus is like a roller coaster. In the first year, I kept track of the times I was in the hospital—seven. After that, it wasn’t quite as important. I’ve had joint pain and swelling, fever, enlarged spleen, hepatitis, encephalitis, pleurisy, pericarditis, myocarditis, nephritis, and gastritis—a long, long list. At this point, I haven’t been in a hospital in years.

But if the crushing fatigue and body aches and pains of lupus were not enough, a rare reaction to the drug Compozine took things to a much higher number on the smiley face chart.

While hospitalized at age 22, this time for gastritis, an injection of Compozine triggered violent spasms in my jaw, face, and mouth. My eyebrows froze in a freakish look of surprise. I couldn’t speak, and my tongue became ridged and pointy. Then my jaw started sliding back and forth with such force that it dislocated. I was terrified. When the nurse came into my room, she took one look at me and ran out of the room yelling. Looking at myself in the mirror, I thought, hey, maybe I’m actually possessed. Maybe that’s what this has been about from the beginning!

The nurse came back with a doctor, not a priest, and gave me a shot of Benadryl. The news spread across the hospital about my reaction, and in moments my room was crowded with nurses, doctors, and orderlies all wanting to take a peek at the spectacle. They had heard of this reaction, but no one had witnessed it firsthand. I felt like I was in the zoo. After the shot, the nurse did tell me what was going on. She said I had a rare drug reaction and I would get better. About 8 h later, the whole ordeal repeated. My jaw started to skate back and forth, and this time I heard snaps and pops. After more Benadryl brought things back to normal, my jaw remained permanently locked shut. I now drank my meals through a straw, and suffered agonizing headaches, before eventually receiving bilateral jaw implants.