In a Boston University longitudinal study of sustained employment of people with psychiatric conditions, 93% of the participants were taking medication at the time of entering the survey. Does that mean if someone pops a pill, she’ll definitely be able to hold a job? Not necessarily. However, it does suggest that the meds play a key role in the functionality of the respondents.
As I’ve said before, I’ve been in the workforce since 1990, and I can attest that if I didn’t take the pills, I’d function less than optimally. Drug-free for four months, when I relapsed I could barely read or write. It’s been my experience that, universally, if someone goes off her meds, she’s likely to get sick again within a year.
Three people I’ll call Annie, Stefano and Kara all felt they were doing well enough to discontinue treatment, and they ended up hospitalized, hearing voices again or otherwise disabled. Our reasons for not wanting to stay in treatment have a familiar ring:
“When I got sick, my grandfather was in a coma/sister had cancer/son had leukemia/etc., and I got sick as a result of that. Now that the stress is out of my life, I don’t need the meds.”
“I’m not really sick. What happened to me was just a fluke. How can I be sick if I’m doing much better than most people with schizophrenia?”
“I’m not crazy. If I go off the meds, it’ll prove I’m normal.”
If you catch yourself saying these things, ask yourself if the risk is worth it. I’ve known someone who felt she took longer to bounce back after each psychotic episode, and the more episodes you have, the less likely it is you’ll be able to regain your prior functionality.
A variant on the above self-stigma is agnosognosia, the lack of insight that is a true symptom. For more on this, read Xavier Amador’s compelling book, I Am Not Sick, I Don’t Need Help.
Psychiatry has come a long way since insulin coma therapy and frontal lobotomies. I’m grateful I was diagnosed in 1987—a time when the available medication quelled my brain’s fracas of thoughts and feelings. I got better quickly, and when I saw the other halfway house residents were a lot sicker, I thought I couldn’t possibly have the same illness they did.
Indeed, schizophrenia may be seen as a disorder with a spectrum of manifestations. No one-solution-fits-all kind of treatment will work for everyone. Two concepts are vital to understand in the current recovery-focused movement. Dr. Thomas Insel, Director of the National Institute of Mental Health (NIMH), is quoted in the fall 2006 NAMI Advocate:
“If you are a person with an illness, or a family member, or a health care provider, you want to know which treatment is going to be best or which might involve too many risks for this particular person. Personalized care takes us to that question in two ways.”
He continues: “First, it takes us to what I call cure therapeutics, that is, beyond just recovery. We want to talk about getting to the point we now talk about with cancer or diabetes or hypertension. It’s about not just making people get better; it’s making people well.”
The other aspect Dr. Insel talks about is strategic prevention, “a concept familiar to many people because it’s at the heart of modern cardiology and of dealing with certain forms of cancer, as well. Strategic prevention means understanding which people are specifically at risk and developing interventions long before the disease does its damage.”
Currently, psychiatrists have to wait until the first psychotic break and then try to treat the schizophrenia. Nobody can predict who will do well if they go off meds, and who will recover if put on meds and who won’t.
That’s why a drug holiday is the riskiest venture of all. If it were proven possible that someone could go off her meds and do well, that would be another story. It isn’t even proven that if someone gets psychotic for the first time, and goes unmedicated until her “brain reverses itself and heals,” she will recover fully.
Only a minority are so lucky, and I’d take a stab that they have the mildest of a mild form of the illness, or were misdiagnosed. For too many of us, the self-stigma is alive and well. I’m 41 years old as of the writing of this entry, and I’m convinced that if I had a role model back in the early days of my recovery, I wouldn’t have internalized the guilt about being sick.
Here’s the truth: there’s no shame in having a chemical imbalance. Until there’s a cure, medication is the best treatment. My next blog will talk about recovery and remission, two different concepts that taken together, suggest how a person’s illness can improve over time.
Leave a comment below, or share your thoughts in the schizophrenia message boards.
View this interview with Dr. Thomas Insel on BipolarConnect.com to find more information on coping and recovering with mental illness.
Published On: January 08, 2007