When I was in high school, I went back to my old junior high to enjoy my younger sister’s performance in a band concert. Afterward, when I was waiting for her in the band room, I noticed a junior high boy, across the room, staring at me with a funny look on his face. While I was wondering why, my sister walked by him and he said something to her. She smiled and walked over to me.
“What did that boy say to you?” I asked.
“He said, ‘Your sister keeps winking at me.’ “
She and I both laughed because we knew I had this weird habit I couldn’t seem to get rid of: When I wasn’t actively trying to stop it, I would blink my eyes rapidly, and once I got started, it required supreme effort for me to stop. Because this habit was embarrassing and inconvenient, for years I had tried to control it. I developed the ability to suppress it for periods of time, but it would always start up again. I ended up modifying it so that most of the time it was more of a half-blink. Unfortunately, a half-blink looks pretty much like a wink.
I couldn’t live with that junior high kid thinking I was flirting with him, so I walked across the room and told him I wasn’t winking at him. “There’s something weird about my eyes, and sometimes they just do that,” I said. Not a terribly convincing explanation, but that’s pretty much all I knew at the time.
This blinking problem started when I was a child, sometime in elementary school. Over time, I developed other habits as well–repetitively clenching and unclenching muscles, making sounds with my mouth or nose, moving my body in certain ways, making faces. I noticed these habits of mine, and I tried to stop doing them, but I found that doing so took tremendous effort and energy. I also noticed that when I got myself to stop doing one thing, a new habit would pop up in its place. After a while, I felt like I was playing Whac-A-Mole with my own body.
As other people noticed my habits and said something, or misunderstood my body language, I grew increasingly determined to make them stop–or at least hide them. So I learned to suppress–most of the time–the ones that were obvious and indulge the ones that were more hidden. I also learned to mask some of them as natural movements, like nodding my head or clearing my throat.
This problem continued into adulthood, and I got pretty good at suppressing these movements and sounds in public (especially at work), but the effort sometimes exhausted me. And I would make up for it when I was alone, dropping my control and letting them fly. I noticed that as stress increased, so did my weird habits. The more tired I was, the worse they got. Sometimes I would engage in a repetitive movement so much that I would get sore muscles or cramps. Sometimes I blinked (or half-blinked) my eyes so much, I got headaches and sore eyes. At other times, they didn’t seem to happen much.
I still didn’t know why I had this problem, but I was pretty sure it was a dysfunctional way of dealing with stress, so I tried minimizing stress and intentionally relaxing. These strategies helped, but they didn’t make the problem go away.
Then one day, riding in the car while my husband was driving, I heard an eye-opening story on NPR. It was about Tourette syndrome, a neurological disorder I had always misunderstood as simply a compulsion to yell out obscenities at inappropriate times. The broadcast explained what Tourette syndrome is, shared some stories of people who were living with it, and mentioned that one of its first symptoms is often eye blinking in children.
As you can imagine, this caught my attention. I turned to my husband and said, “I think that’s me!” I had never imagined that my weird habits, which I had tried so hard to get rid of, were not simple habits but tics, “unvoluntary” movements–neither truly involuntary nor voluntary–that I could suppress for a while but ultimately could not make go away.
Soon after, I paid a visit to a neurologist and got the diagnosis–sure enough, I have Tourette’s.
On the surface, nothing changed in my life when I got this diagnosis. This knowledge of my diagnosis didn’t make my tics go away or increase. It didn’t require treatment of any kind. The neurologist gave me information about medications I could take, and I elected not to take them because my case is far from debilitating and I manage my tics pretty well.
Internally, though, this diagnosis meant a big change. I went from a weirdo who winked at junior high boys without even knowing it, to a person with brain circuits hooked up a little differently than most. I went from someone with bad habits and bad stress management, to someone with a medical condition I could manage.
Tourette’s can be an amusing diagnosis to some people, mostly because it is so often associated with coprolalia, the specific symptom that causes people to let fly with obscenities or insults (I, like 90 people of people with Tourette’s, don’t have that symptom), but it’s not a diagnosis to be ashamed of. After all, there’s nothing I can do to change my basic neurological wiring.
By contrast, my mother endured 20 years of hospitalizations, medications, and therapy before she received a clear and confirmed diagnosis of schizophrenia–even though the problem was obvious long before. And even now, many people mention this diagnosis only in a whisper.
Like Tourette syndrome, schizophrenia is a brain-based, hereditary disorder that can be treated and managed. But unlike most cases of Tourette’s, schizophrenia is attached to a terrible stigma that makes its sufferers feel tremendously ashamed. Many are so ashamed, they refuse to seek treatment. They refuse to acknowledge their illness even to themselves. They choose life on the streets and in homeless shelters, live in constant fear, and make themselves a burden on society because of a highly treatable illness.
Our society stagmatizes not just schizophrenia, but mental illness in general, in ways that we no longer stigmatize much of anything else. Our mental health-care system is aware of this stigma and wants to help people avoid its effects–so it is reluctant to “label” people with diagnoses.
But diagnoses and negative labels are not the same thing. And without the information inherent in a diagnosis, how can we expect people to take responsibility for managing their illnesses?
Imagine, after a third piece of cake on your birthday, you fall into a diabetic coma. You wake up in the hospital, where doctors and nurses pump you full of fluids and insulin. When you’re feeling somewhat better, you are sent home with well-wishes and some insulin, but no explanation to go with it. You might take insulin for a few days or a few weeks, figuring if it helped you feel better at the hospital, it might help you feel like your old self again. Then, once you were feeling like your old self, you’d probably stop taking it–why should you have to continue? No one told you you had diabetes and would need to take insulin–and change your lifestyle–from that day forward.
Of course, our health-case system would never overlook such malpractice, but this basic scenario happens all the time to people who should receive mental-health diagnoses. During a hospitalization for severe depression, debilitating anxiety, or even a psychotic break, suffering people are stabilized on medication, given a prescription to fill, and sent on their way. Should we be surprised that once they’re feeling better, many of them stop taking their medications, stop going to therapy, and tell everyone they’re fine? They’ve received no understanding of a diagnosis that means they need ongoing treatment and lifestyle choices to be healthy.
Mental-health professionals, and the rest of us, must stop treating diagnoses as if they were the same as contemptuous labels. The more we do so, the more we reinforce the idea that mental illness is cause for shame. We feed the stigma. We nurture the idea that a mental-health diagnosis means the end of hope for a life worth living.
Some people think a mental-health diagnosis is a curse. Mental illness–like all other illness–is evidence that we are all living under a terrible curse of our own choosing. But the diagnosis itself is not a curse. It’s a blessing–the blessing of truth, which can help set us free.
© 2013 Amy Simpson.