This SharePost continues the focus on schizophrenia medication in greater detail. It will list the numerous reasons a person might not want to take medication and effective strategies for finding the right doctor to treat you.
An estimated 40 to 90 percent of patients with schizophrenia don't take their medication as prescribed. [Morra-Carlisle, M. (2012, spring). Following the doctor's orders: compliance is the surest way to get well. SZ magazine, 10 (2), 14-15.]
Peers give numerous common reasons:
- The dosing schedule is hard to follow because they have to take multiple pills at different times of the day.
- The individual doesn't think he needs medication. About 50 percent of the people diagnosed with schizophrenia have a condition called anosognosia, caused by frontal lobe dysfunction in the brain. In plain English, the person lacks the awareness or insight that he is sick.
- The person has garden-variety denial. Denial is actually a coping mechanism used to process information when the truth is too painful to bear. You don't want to admit you're sick because it would signal you're crazy.
- The individual has gotten completely better so believes he no longer needs the medication and will be able to function without it.
- The person is embarrassed or ashamed of needing medication.
- The individual doesn't want to experience the side effects.
- The person won't take medication because they don't believe in it or they belong to a faith that prohibits certain kinds of medical treatment.
As you can see, there are at least seven common reasons why someone might not take medication. I was diagnosed in the fall of 1987, given Stelazine within 24 hours of my breakdown, and three weeks later the positive symptoms had disappeared.
In April 1992, my doctor supervised a drug holiday that failed three months later. I was embarrassed to be diagnosed with schizophrenia because I didn't want to be crazy. Also, I held a full-time job at an insurance firm and felt I was doing well enough that I didn't need to take the medication.
In July 1992, I started taking the Stelazine again and it worked wonderfully for 20 years with only one side effect that I continued to live with. In April 2007, my current doctor switched me to Geodon which I've been on over five years now.
A curious fate for those of us who won the war against the symptoms and got our lives back better than before is that certain providers don't believe we could possibly have schizophrenia to begin with. I know two women whose doctors took them off their medication precisely because these professionals had a stereotype of the kinds of people that need treatment.
I met with a therapist for one intake session and he told me, "You don't have schizophrenia. You were bullied as a kid so developed delusions of persecution as an adult. You don't need medication. All you need is analysis. You can join my group therapy, but don't tell the other members you just got out of the hospital."
If your loved one has anosognosia, I recommend you read the 10th anniversary edition of Xavier Amador, PhD's I Am Not Sick, I Don't Need Help (2010, Vida Press). It's the updated classic guide to helping someone with mental illness accept treatment. I'm giving my copy to a woman who can use it. I might recommend it too for anyone whose loved one refuses to take medication for other reasons.
If you're a peer who needs to take medication, I have some suggestions.
Take the medication every day as prescribed to get the greatest benefit. I've taken my meds every day for 20 years and missed only one dose on the day I had to get a medical exam. I was sedated and exited the procedure room not fully alert. Luckily, my parents had driven me there and stayed in the waiting room while I was seen and drove me back home. Otherwise, I would've needed to have the receptionist call car service.
In a scenario like this, missing one dose is understandable. Yet repeatedly skipping doses causes the medication to be less effective. For some of us, missing just one dose is enough to send our brains off-kilter.
According to Jeffrey Lieberman, MD, chair of the Department of Psychiatry at Columbia University; director at New York State Psychiatric Institute, and Psychiatrist-in-Chief at New York-Presbyterian Hospital/CUMC: "Patients should stay on their meds. If they stop, the underlying pathology could be reactivated." [Medland, M. (2012, spring). Medication tolerance: Can antipsychotics lose their effectiveness over time? SZ magazine, 10 (2), 16-17.]
A not insignificant barrier to treatment not listed earlier is the person's relationship with her doctor. Not all psychiatrists are equal in their level of professionalism. The ex cathedra nature of the relationship also could keep the patient from speaking up and asserting her rights or asking questions about medication changes or treatment options newly available.
My first psychiatrist I saw for 11 years until he died of a fatal heart attack. He would light up cigarettes during our session. I detested cigarette smoke, yet whenever he asked if he could smoke, I always told him yes.
After he died, I saw another doctor for five years. He kept pushing me to switch from the Stelazine, a traditional neuroleptic that caused no weight gain, to one of the atypicals that would cause upwards of 100 lbs of weight gain. I kept nixing his requests even though he said he'd put me on Risperdal, the lesser evil of all those drugs in his mind.
His reason for making the switch was that "Everybody's doing it." That wasn't a good enough reason for me.
At the end of each session, like the clock striking midnight every day, he would ask me one of two things. Either he hounded, "Do you want to switch meds now?" or he insinuated "Are you in a relationship?" I cannot describe his physical stance in his chair when he repeatedly asked me, "Are you in a relationship?" I do not want to be sued by this bozo because I easily identified him.
I should have stopped seeing him sooner. As I was about to leave our last session, he asked me "Are you in a relationship?" and I got alarmed. Did he want me to be his girlfriend? Why was it so important to him whether or not I was in a relationship? Why did he end our sessions with those exact words every time?
I hustled my feminist self out the door. As soon as I got home, I called his answering service and canceled our next appointment. I said I would call back to reschedule. This was back in the day when doctors had answering services where a real live woman would answer the call and take a message. Of course, I didn't call back
It leads up to how to find a good psychiatrist. I researched doctors in my neighborhood via the health plan's directory and had no luck. Yet choosing two doctors from your health plan and using one session with each of them to interview each doctor is a good strategy. Choose the one you feel the best rapport with and have a good intuition about.
Finally, I asked a woman who was a friend of mine at the time and she gave me her psychiatrist's name and address and phone number. From our very first meeting, I knew Dr. Altman would be the psychiatrist I saw until I died or he retired, whatever event came first.
You can find a good doctor using the CastleConnolly directory. Or your local public library might have a print copy of your Metro Area's Top Doctors. (There's one for New York City where I live.)
Bring along a list of the Top Ten Questions to Ask Your Doctor.
You're paying good money for the psychiatrist's services so you deserve the best possible professional treatment.
I would also recommend you let your mother or father or husband or wife or another trusted adult friend talk to your psychiatrist as needed so they can share their observations about your symptoms.
In the next SharePost, I'll detail ways to remember to take your medication and how to use each session with your doctor productively, and talk about common treatment scenarios and how to handle them.