Chronic Illness
How I Survived a Rare Autoimmune Disease
A Personal Perspective: Undiagnosed illnesses require persistence and courage.
Posted September 18, 2024 Reviewed by Lybi Ma
My topic for this blog column is close calls and narrow escapes. I thought it would be an easy topic since I’ve had quite a few close calls in my life. But I found myself avoiding writing about the worst one of all: a mysterious illness that hit me when I was 31.
It has been so much easier to think about my other narrow escapes, like when I was a kid and needed stitches at least four times. I also suffered a couple of mild concussions. I fell into a lake when I was 4 and nearly drowned. I broke my nose when I was 12. I was in a bad car accident when I was 20 and walked away with only bruises on my knees and hands. I’ve had breast biopsies three times but all the results were negative. I crashed my motorcycle on a slippery snowy road when I was 23 and again needed stitches, but I wasn’t run over by a passing car. Then there was my marriage to a verbally abusive man. I walked out of that relationship when my daughter Jessie was just 1 year old; I left without a safety net, by which I mean, not much money.
I walked out of my marriage and immediately fell ill. I was ill for two years. At first, I thought it was a cold that would run its course, as colds do. My throat hurt; I was tired with a crushing fatigue that no amount of sleep could alleviate. A rash appeared on my arms and belly. It came and went along with intermittent low fevers.
I felt like my body was playing cruel games on me. One day I would wake up feeling fine. The next day I’d wake up just as sick as ever. The illness was constantly on my mind, even on my good days. I didn't know if this preoccupation was an overreaction or a reasonable concern.
I didn’t tell anyone that I was sick that first year, not even friends. For one thing, I didn’t want my ex to have grounds to sue me for custody of our daughter. And I felt that if I didn’t acknowledge that I was sick, it wouldn’t be real.
I couldn’t afford to be sick. I was a self-employed psychotherapist. My clients needed me; my daughter needed me. There was simply no room in my life for illness.
I pushed myself to do everything I’d been doing when I was well, even when it was hard, and it was nearly always hard. I saw my clients. I swam in the community pool. I took dance lessons. I took care of my daughter Jessie. I functioned, barely.
Sometimes after I’d settled baby Jessie in her crib at night and slid into my bed to read, I’d fall apart and cry. I have cancer, I’d tell myself, I’m dying.
Eventually, when the illness showed no sign of going away, I went to a nearby university library where I lived and scared myself silly by reading all the terrible things my symptoms might add up to. I thought it might be Kaposi sarcoma, a terminal cancer that people with AIDS develop.
Finally, I went to the doctor. The first two doctors told me I was sick from the stress of leaving my marriage. I should relax. They were so wrong. My marriage had been stressful, and leaving had been a huge relief.
Another doc thought my symptoms were allergies. He tested me and started me on allergy shots. Finally, one doctor listened to my whole story for a tearful half hour and ran tests that the other doctors hadn’t. Her conclusion: “This is not stress. You are very ill, but I can’t say why.” Because she couldn’t think of anything else to do, she tested me for hypoglycemia—low blood sugar—and I tested positive. She put me on a no-sugar diet, which made me feel better, but didn’t make me well.
Toward the end of the second year of the illness, I developed canker sores inside my mouth and down my throat. I couldn’t swallow. My allergy doctor diagnosed it as herpetic stomatitis and prescribed a weekend of rest. He told me to go somewhere alone, leave the baby with her dad, and spend a weekend resting and sleeping. Stop trying to push through the fatigue. I loved the idea.
I went to a resort in northern Wisconsin, that had a restaurant (where I managed to eat after spraying my mouth with lidocaine) and a swimming pool and sauna. I swam; I steamed in the sauna, but I spent most of my time lying in bed reading about alternative ways to heal. I practiced using images of myself jumping rope in a bubble of golden light. I told myself over and over that I was getting well. I read the book, Anatomy of an Illness: As Perceived by the Patient by Norman Cousins; he healed himself from his own mysterious illness by taking huge doses of vitamin C and watching funny movies. I went for a nude swim on a nearby beach, at sunrise, and pictured the residue of my bad marriage dissolving into Lake Michigan. Goodbye, goodbye.
When I returned home—with my mouth, throat, and spirit feeling better—I started taking 5000 milligrams of vitamin C daily (like Cousins did). I continued to rest whenever possible, and I strictly followed the hypoglycemic diet that the doctor had prescribed.
Slowly, I got stronger. First just a few days of feeling normal, then more days, then more, until I realized that it was over. I’d been sick and scared for two full years but I survived. Somehow I survived. I didn’t have a name for what I had survived nor an understanding of how I had survived, but I did survive. Or so I thought.
But the disease returned in a much more serious form—higher fevers, joint pain, the rash, and liver and spleen inflammation—seven years after that first bout. I spent most of one summer in the hospital and nearly died, but I slowly recovered again. Still without a name for the illness.
Seven years after that, I had another severe episode. This time I learned that I needed prednisone; I took it immediately. As a result, I had fewer serious symptoms. I went to the Cleveland Clinic during this episode and finally learned the name of my illness: Adult-onset Stills disease, a very rare autoinflammatory disease that will always lurk inside my body, waiting.
Knowing its name and learning that other people have this disease—though, not many—has helped me remain hopeful. Right now I am well. And my history has shown me that I'm a survivor and will be again, over and over again.