I am alive today, after 30+ years of serious mental illness, because of three things: effective medication; good cognitive therapy; and building new dreams, meaning, and purpose.
I also know that the issue of medication noncompliance is one of the greatest problems that faces consumers and their loved ones. The choice of whether to take or not take meds is at the core of many broken hearts, lives, and families. On the surface, it seems to be a no-brainer: if you have a biochemical disease, take the pills to help with the symptoms. It seems simple, but it’s not. 20-28% of people quit taking their meds after one month. 40% quit after 3 months. And there are reasons why. There are issues and frustrations connected to medication that many family members and professionals perhaps aren’t aware of. Issues they need to know.
In my own struggle with MI, there were many reasons why I didn’t take medications.
Sometimes I couldn’t afford medications and doctor appointments. The disability hoops you have to jump through are so tough and shaming, that it makes it hard to receive financial help and the illness itself makes it impossible to have a steady work history, with a steady salary and good insurance.
There were times I was so depressed and discouraged, and had been that way for so long, that I didn’t believe I was sick. I thought that this was just the way I was, and taking medication seemed like a waste of time.
Through the years, the issue of side effects has been a crucial one. The drugs did help the 2 or 3% of the brain neurotransmitters that were effected by the illness, but were toxic to the other 97% of the brain that ran everything else. Fatigue, numbness, dry mouth, constipation, the “shakes,” drowsiness, loss of sexuality, loss of concentration, and loss of sense of self only begin to cover the gamut of side effects from psychiatric medicines. One of my friends was once on seven different meds at the same time: one for depression and the other six to counteract the side effects of the others. Reading about the side effects on a pill bottle isn’t the same as having to live with them, 24-7. Sometimes we who’ve had to take these medicines over the years, have wondered what’s worse: the illness or the cure? Even though the meds are becoming more and more refined, many of us are still hit with these residual problems many of us have been burned so many times that it’s hard to try something else, to trust again.
Trust is at the heart of another important factor: with the shortage of psychiatrists, it takes an average of six weeks to get an appointment. When you finally get to see a doctor, he spends an average of 6-8 minutes with you. Not much time for him to get to know you or your history. Not much time to decide which powerful brain-chemistry-altering medication he’s going to ask you to take. Not much time to develop a trusting relationship. One of the most effective ways to have people stay on their meds, is by having the time to build trust and for the doctor to give us options, let us have some decision on what goes into our bodies and brains.
The world is facing a medical crisis because certain staff infections have become antibiotic resistant. This is because antibiotics have become so overprescribed and misused. If someone had a sore throat, they would take the pills 4 or 5 days, until they felt better, and then put the rest of the antibiotics back in the medicine cabinet. If a “normal, healthy” person cannot finish a week’s course of antibiotics, imagine how hard it must be for someone struggling with schizophrenia, OCD (obsessive-compulsive disorder), or bipolar disorder to take pills every day for the rest of his or her life. New delivery systems for the meds could substantially help this.
For much of my struggle with MI, I didn’t want to be well. I was afraid that I would lose the most important piece of my creativity, of my “color,”of what made Pete, Pete. I was afraid that if I got “well,” I would become a “normal,” ordinary, boring person unmotivated or unable to create. I was afraid that without my MI, I would shrivel up like a dry leaf, and the wind would blow me away.
Sometimes I was so frustrated and angry at the medical system that seemed so helpless to help me, that seemed sometimes as if they were trying to make me sicker, that I refused to take the meds a classic “cut off your nose to spite your face.”
Why I didn’t just take my meds is because if I did, I was admitting to myself and the world that I was mentally ill. Even now, in 2002, the mystery and dread that still comes with these diseases makes abandonment, social disrepute, and financial difficulties to the point of losing your job all possible. With the stigma from society and your own “inner tyrants,” your self-image can take a terrible beating, one that many never recover from. You feel like your life is over, that you have no credibility, no gifts, nothing to offer.
I believe medications are lifesavers that are becoming more effective by the day, and I have seen thousands of people benefit from them. But our doctors, friends, and family need to know that taking them isn’t such a no-brainer. The more they know, the smarter, kinder, and better allies they will be.