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Medication - The foundation of Recovery
The following speech was given in Alabama at their AMI convention. Ed Francell has schizophrenia and is a consumer, and son of a former NAMI Board member.
Thank you very much. You know, trying to follow Dr. Torrey is a little like trying to follow Michael Jordan in a slam dunk contest. It's virtually impossible. So instead of trying to dunk, I'm going to throw up a couple of shots and hope they go in.
What I'm about to say aren't the views of all consumers. I've been criticized for putting too much emphasis on medication. Of course it's just one piece of the puzzle. But it's the piece that can make the biggest difference in a consumer's life. And that's why it's important to carefully fit that piece into the recovery puzzle. Obviously, I'm not a doctor. I never tell anyone to raise or lower dosages or stop medications. But I do encourage questioning and being honest with doctors. I tell consumers to do that all the time. After all, it's their lives.
However, some people still think of psychiatrists as the glorified gurus of medication. So they think there's no need to learn anything or ask questions. All you have to do is pop pills and see the shrink every so often. There's a term for this kind of thinking. It's called passive recipiency. And the problem is it can stifle recovery. My recovery began when I got off the bench and became an active player in the treatment game. Making the shift takes time.
Medication issues break down to about five categories. I'm going to talk about my experiences both as a consumer and a provider. The issues are:
(4) education and support, and
(5) medication response.
When I got anxious and paranoid a few months before graduating from high school , I didn't even know that psychiatric patients took medication. I kept looking for the couch in the psychiatrist's office. I found out quickly you had to sit up and eyeball the doctor. It made it clear to me that you had to be a player, not a spectator. I moved in and out of the hospital from about 18 to 22, and field tested about 15 drugs in the process. By luck, a second opinion found me a stabilizing medication. I've been seen as paranoid schizophrenic, bipolar, and majorly depressed. I'm currently diagnosed with bipolar disorder and panic disorder with agoraphobia. Someone once said, "Oh, that means you're a depressed maniac with the heebie geebies." Well, I guess that's one way to look at it.
We'll start by talking about compliance. when your car breaks down do you ever yell at it? It can relieve frustration. But pretty soon you realize you've got find out why it's not working. The same thing holds true with medication.
If you want to attain compliance, the first step is to know why people don't comply. I've refused meds on occasion. Of course, I think I was right, but I could've been wrong. Yes, non-compliance is frustrating. Yes, it makes a trip to the hospital more likely. Yes, it disrupts recovery. And yes, it causes great gnashing of teeth. However, it's important to put it in context with other severe and persistent diseases. Diabetes and high blood pressure patients go on and off meds, too.
Reviews say that compliance among high blood pressure patients is only about 50%. Ask any physician who treats hypertension how frustrating non-compliance can be. Compliance problems come in three basic flavors:
1) errors due to the illness
2) side effects and,
3) errors due to lack of education.
We'll take a look at these problems and consider some possible solutions.
Errors due to the illness
A common error is believing that one isn't ill, and particularly in paranoid illnesses that there's some kind of persecutory "plot". However, some patients may suspect something's wrong with them, although they can't put their finger on it. At one point when I was sick, I thought medication was a placebo or sugar pill, but it never became poison, so I took it. What can be done about this? I'll talk about forced treatment as a last resort later. For those not in extreme circumstances, I take the following approach: If the person says, "I'm not ill, and I won't take medication", I say, "O.K., we'll talk about it later." Then we talk about something neutral, like listening to music, the weather, etc.
After gaining some trust, I talk about meds again. If the person says "There you go again", I back off and try to gain more trust. Sometimes, the person agrees to give meds a try. Ron Diamond, who's a psychiatrist, has written an excellent piece on moving non-compliant consumers towards meds. He says you gain trust and help the person see how medication can improve his or her quality of life. Some consumers get real agitated and possibly violent off meds. My agency has a number of consumers who become real agitated upon stopping medications. Sometimes we have to use outpatient commitment as a protection. Nobody wants to have anyone get hurt. Refusal may not make sense, but finding out the reasons why can help. Arguing leads nowhere. Saying something like, "If you don't take meds, you'll decompensate and end up in the hospital" has a blaming ring to it. It may be better to say something like, "Most of the time, if a person stops their meds, they end up in the hospital", or "Taking meds often reduces hospitalization and allows a person more time to _________. (work at a job, listen to music, see your friends, etc.).
Now I'd like to move to a very important point which is side effects. I once knew a consumer with schizophrenia who had a lot of restlessness, or a side effect called akathesia. He made the greatest statement about side effects I've ever heard. He said, "When I look good, I feel bad. When I look bad, I feel good." Non-consumers and consumers often come from polar opposites when it comes to medication. To non-consumers, medication response often obscures side effects, and to consumers, side effects often obscure response. When a side effect becomes severe, though, it's no longer a side effect, it becomes the primary effect of the medication.
When people ask me what side effects are like, I often think of what Louis Armstrong said when someone asked him about jazz. He said, "If you have to ask what it means, you'll never know what it means." I'd just like to briefly cover a few side effects I've had. Dystonia is a drug reaction that can be very subjectively unpleasant. It's where the throat muscles become rigid, like a powerful invisible force grabbing you by the neck and holding you off the ground. Dystonia scared the hell out of me. You feel very helpless, like falling into quicksand. Akathesia is to psychiatric patients what nausea is to cancer patients. It's the worst side effect I experienced. I remember having to get up from the dinner table one night and running three miles as fast as I could just to try to get rid of it.
The more severe it becomes, the more you can't feel the positive effect of the drug. Both of these side effects are controllable and not life threatening. But they can happen without warning and can feel worse than the illness itself. Tardive dyskinesia, on the other hand, is sometimes irreversible and can cause concern among consumers and families.
How people feel on medication, especially persons with schizophrenia, was often disregarded. This is being re-evaluated, and now many clinicians regard this feedback as accurate and real. In an recent article, a psychiatrist said that "The patient who experiences a less favorable . . . response and the noncompliant patient may be one and the same." Clozaril studies have made psychiatry re-evaluate the impact of side effects. Compliance with Clozaril, even with regular blood draws and side effects like sedation and drooling, has consistently averaged over 80%, sometimes as high as 95%. Dr. Herb Meltzer, a Clozaril researcher, asked 11 Clozaril sub-responders why they continued to take the drug. These are people who didn't respond well to the drug.
Ten of the 11 said that the lack of side effects was the major reason. Dr. John Ratey of Harvard described successful Clozaril response as "a guided missile that goes right to the site of aggression in the brain without making patients stupid, apathetic, or non-sexual." On the other hand, medications do have positive effects, too. Antipsychotics reduce or eliminate hallucinations or delusions. Mood stabilizers and anti-depressants can allow persons to live essentially normal lives. I've been helped by drugs in all classes.
However, we should be able to do better. Some medications now in use were accidental discoveries. I firmly believe that the reduced side effects of new drugs will result in no less than a revolution in compliance in the next 10 years.
Errors Due to Lack of Education
Education has great corrective power. Some people only need to be told once; others need years of repetition. Sometimes, persons with bipolar say, "I finally realized that the highs can be destructive, too". Such a person I knew with bipolar called med compliance, "Depolarization."
People also refuse medication because of stigma. When a person becomes ill with a neurobiological disorder, he or she enters two prisons: one is the prison of the illness, and the other is the prison of public ignorance. Last year, I remember talking to a person with schizophrenia who didn't think he was ill. He pointed to the television and said: "Who would want to have schizophrenia, anyway?; All those people do is shoot people."
I'd like to say a few words about stigma and public ignorance. You'll have to excuse me if I digress a bit, but you'll see that this has a point related to medication. It's going to do little good to improve consumers' functioning with more effective meds if they're sentenced to live in a prison of public ignorance. And that's exactly what we have now. We're losing millions of research dollars because of it. How many fraternities or sororities raise money for schizophrenia? How many athletes favorite charity is neurobiological disorders? How much would wealthy individuals give to neurobiological research if they knew the need? Why do we put up with this level of ignorance? To me, this is a disgrace.
NIMH has plans for schizophrenia research, children and adolescents, and services. They're all good plans. But with all the stigma and ignorance around, I would've thought a plan for public education would've made a lot of sense, too. There exists what I call the "You get what you pay for" rule. The mental health groups, including the Mental Health Association, NAMI, and the now defunct American Mental Health Fund spent $1.7 million on public education in 1988-89. That's about one-fifth of what animal rights groups spend.
Granted, the mental health groups have limited funds. The Cystic Fibrosis Foundation, on the other hand, spent $11 million that year on public education. There are 140 persons with severe neurobiological disorders for each person with cystic fibrosis. So you can see why it's called the "You get what you pay for rule".
The quality of the mental illness services is directly proportional to the quality of public education efforts. In order to become a priority, one thing we need is media saturation. Don't get me wrong, I've loved the T.V. movies on mental illness. But AIDS and drug abuse didn't become national priorities because they were the subject of a T.V. movie every two years. They became national priorities because they made the news every night. The news coverage for neurobiological disorder will never equal the coverage for those problems. Therefore, we need a sustained, intensive non-news campaign to help eradicate ignorance once and for all.
The only groups that have enough money to do this are the drug companies. there's a potential $1 billion market for antipsychotics alone, and another large market for antidepressants. These companies could transfer a small amount of their marketing budget, perhaps $5 million each for a national campaign of public education. $5 million is pocket change to these companies. The reduced stigma might result in more people seeking treatment. Not only that, if people became concerned about neurobiological disorders, it could have a snowball effect, with more money raised for research or services. Also, some of the 99% of persons in this country who've never heard of NAMI might eventually hear about it. I suggest we make this a moral issue, like the "know when to say when" beer company ads or the "we care about the environment" messages of the oil companies. Granted, some persons are opposed to this; they say we will "sell out"; we will be co-opted. We can make it clear this is unacceptable. But if you're opposed to this, then my question is, "Where will the money come from?"
If you can find someone who can put up $10 to 20 million a year for public education, that's great. But I really don't think that's going to happen. We've got to remember that tackling the massive problem of stigma and ignorance requires a massive effort, and that effort takes money. If the prison of public ignorance isn't torn down, it will continue to keep people from seeking treatment, cost us research money, and suppress recoveries. Coercion End of digression. I'll move over to involuntary treatment. Very controversial. There are some consumers out there who've had bad experiences with it. On one hand, some consumers say involuntary treatment is an infringement of their freedom. On the other hand, persons caring for severely psychotic persons say that the person's decision-making is impaired because of the illness.
As someone who's worked with very ill persons, I know that violence or agitation can be connected with stopping medication. I know how unpleasant it can be to have one's freedom taken away. In one hospitalization, I barely signed voluntary, but a day later I wouldn't have. I was put behind a locked door when I didn't want to be. I didn't feel sick. However, as a social worker, I've had to wait for a court-ordered medication, too. I understand the agony of watching someone suffer. And psychosis is a state of suffering.
If persons opposing all forms of involuntary treatment spent time with very ill persons, they would see what impaired judgment is all about. Of the studies that have been done on involuntary treatment, more than half of consumers involuntarily treated say they were glad they received this type of intervention. Of course, reasonable protections need to be built into the process. But sick people have a right to treatment, too. Speaking of sick, one thing I get rather sick of hearing about is 'labeling' or 'psychiatric labels'. This is a label. (a cheap one at that). What I'm talking about are diseases. I suggest that people who want to talk about labels should try the clothing business. I think there'll always be consumers who'll refuse to take medications and a small percentage who become violent. The hope is that non-compliance will be reduced as side effects are reduced and there won't be as much of a need for forced treatment.
Without a chance for appropriate housing, vocational training or other activity and support, a good response to medication won't amount to a hill of beans. The more support we provide a person, the better he/she'll respond. I've personally found that daily activities increased my self-esteem. Even when I put nuts and bolts in plastic bags four hours a day, it helped keep me on medication. Having a job or activity to do each day gives you reason for sticking with treatment. By far the most common words I hear from consumers are, "I want to work." A place to live helps, too. I lived with my family until I was 24, and I had my own room. It gave me a sense of pride to keep it in halfway reasonable shape.
Now my parents would probably disagree with that statement. But then I got my own apartment, which was another self-esteem boost. Having scheduled daily activities helps reinforce med taking. When a person has nothing to do, time loses its meaning and things like eating meals, sleeping, and taking meds all get disrupted. So it's important that a person develop a schedule.
Education and Support
Even in very ill states, many consumers have a passionate desire, I should say a desparate desire to get better. I'm not saying consumers are right all the time, but sometimes we need doctors who are willing to help us take reasonable risks. When I started to recover, I had to re-learn basic social and living skills. It was a slow process. I remember one day asking my mom how I could get more self-esteem and she said, "You can start by taking a shower every day." And I said, "Oh, that's true", so I did. I had to learn how open up to people more, to relearn social skills like asking women out for dates, making friends, and laughing. Last year my mom told me that for several years after I got sick, I didn't laugh at all. Then one day she heard me trying to laugh at something, and it sounded rusty, like a car trying to start. That happened about a year after I started on an effective medication.
Neurobiological disorders often involve confusion and memory problems. strategies that can help with meds include plastic pill compartments (medisets); agency visits; and injectable medication, which can last for up to a month. I started taking B and C vitamins for anemia three years ago and found it really helped my thinking and memory. I'm as skeptical about vitamins as anyone, but they seem to help a lot. I was never an alcoholic, but about six months ago I became abstinent. I don't recommend drinking for anyone with a neurobiological disorder. My mother Claire, who some of you know, helped me a lot with my recovery, medications included. She'd been a psychiatric nurse for about 20 years before my illness, but that didn't prepare her for everything. However, she gave me crucial supports that accelerated my recovery. For example, she gave me articles and books about my illness. At first, I threw them in the corner of my room, but eventually I read them. Also, whenever a med or symptom problem arose, she told me to call the doctor's office immediately. For example, lithium once caused me to drink so much water it was backing up my esophagus and I was literally drowning. I wanted to stop lithium, but she referred me back to my doctor, who lowered the dose and the problem went away. Now I tell my clients to call their case manager right away, and not to wait. That experience also taught me that you don't necessarily have to throw the pills away to reduce side effects.
In addition, when I was agitated or extremely distressed, from side effects or the illness, she remained calm. That helped. She was also persistent in encouraging medication taking. Many people call it "bugging", but it made a difference. I used to get sick of it, but it helped my compliance. Whenever I go home now, I have access to this gigantic education center, which is her office. There's tons of articles, books, and videotapes on neurobiological disorders. Of course, she still tells me to brush my teeth and comb my hair. I usually respond by saying "I'm 32 years old, I think I've got it by now." I tend to accept these statements as some kind of "biological parental programming."
Another valuable tool I've found are support groups. I've belonged to support groups for years, and we talk about different topics, including medication. It's great social support, and it helps keep you compliant. There are support groups for schizophrenia, bipolar, panic, OCD, depression, and others. Sometimes it takes a while to find a group you like. We have a consumer network in Georgia with 700 members. For the past two years, we've polled members to determine their top five priorities. Two years ago, medication education was the #5 priority. Last year, it was # 2. Whenever I talk to NAMI members, medications are a popular topic. It seems that the workshops on new medications are always "standing room only." The greatest reference book for family members and consumers is this one: it's called The Essential Guide to Psychiatric Drugs, by Jack Gorman, M.D. It costs $14.95 (paperback) and contains easy-to-read descriptions of neurobiological disorders and the drugs used to treat them. It's also helpful for case managers, nurses, general practitioners, and members of the general public. If you don't have this book, get it. If you don't have the money for it, hock something; or if you smoke, reduce your smoking over time. The book costs about the same as a carton of cigarettes. That way, you'll get healthier and learn about medications at the same time.
Several years ago, I wrote down all the medications I've been on, including the ones I'm taking. I listed the drug, when I took it, the major side effects, and rated the overall response. There's about 20 drugs on here. This list prevents duplication and lets me know what's worked and what hasn't. My advice to consumers and families is to get your hands on anything and everything. The more information you know, the better you can put the illness in perspective. To me, bipolar disorder isn't what I am, it's a disease I have. Nothing more and nothing less. I still have occasional symptoms, but education and experience help me handle them. I wear a Medic-Alert tag because one of the medications I'm taking has some interactions with other drugs. This is exactly the same type of tag that persons with diabetes and hypertension wear.
There's one other very important medication that's one of the best medicines of all: It's called kindness. The people I'll never forget are the people that treated me like friend or family. You don't always get rewards for being kind, but believe me, it lasts. My mother used to tell her nursing students that kindness doesn't cost anything. I vow as a provider to dispense kindness freely, because I remember what it meant to me. it's also in short supply in the mental illness system.
Most of the time, the best vocational rehab, housing, social, and other psychosocial supports will not allow you to recover by themselves. When I had persistent symptoms, it was like fighting a battle against myself. The battle took up lots of energy. When a person responds to medication, he or she can stop fighting themselves and direct this energy to the outside. This is how recovery happens. Sometimes symptoms go away by themselves. But the longer they hang around, the less likely that's going to happen. I recently read that if a person stays on medication after a first psychotic episode, a chronic course may be less likely to develop. This has been speculated for both schizophrenia and bipolar disorder.
Each psychotic episode seems to weaken the effect of medication. It's speculated that some people who stop lithium no longer respond when restarted on it. So long-term compliance is becoming more important than ever. A neurobiological disorder can be like perpetual childhood, a kind of roller coaster ride that suppresses maturity. A psychiatrist said that when Clozaril patients respond, "The longstanding immature personality that had been struggling to be healthy, but couldn't because it kept going crazy--is freed. They start to grow up." My experience as a psychiatric social worker has convinced me that the medications we have, particularly for schizophrenia, have shortcomings. I saw treatment resistant patients in the hospital being tried on four, five and six antipsychotics with little response. I often heard the phrase, "We'll have to transfer him/her to the long term unit." I felt anger and rage at the lack of treatment options.
Shortly after I did my internship at the state hospital, they introduced Clozaril there on a very limited basis. I think about half the patients at that hospital could have benefited from it. I also encountered patients endlessly waiting for Clozaril at the V.A.. I've rarely been that frustrated in my life. On the other hand, it's given us hope to see patients improve on Clozaril. Dr. Stephen Paul of Eli Lilly told the Indiana AMI recently that the drugs developed in the next five years will work 10 times better than Clozaril. If that's not hope, I don't know what is. Hope is the name of the game.
I look at the research and treatment of schizophrenia like a plane flight: prior to the mid 50's, we were flying up in the air with no real direction, when Thorazine came out, we headed in a direction, but still didn't know quite where we were going. When Clozaril came out in the late 80's, we started our initial descent, which occurs at a point 20 minutes from landing. We're now on this final approach. We still don't know where and how to land, but it's becoming clearer every day. Other serious mental illnesses are on the last leg of their flights, too.
1) Become educated - Collect information about existing drugs, side effects, and new drugs. The more educated you are, the less fears you'll have, the more options will be open, and the more hope you'll have for the future.
2) Take advantage of a support group - Don't go it alone. Support groups give chances to compare notes and provide support for med issues.
3) Be honest with your doctor and take responsibility- If you're experiencing problems, tell the doctor; don't cast yourself as a burden. Be truthful about symptoms and side effects. A collaborative approach requires honesty and assertiveness.
4) Remember, medication isn't an all or nothing thing - If you're having intolerable side effects or start getting sick, remember that dosages can be changed with the doctor's help. There are other meds that can be tried, too.
5) If you have a med problem, call your case manager or doctor immediately - Don't wait until a problem gets out of hand. Act quickly. Encourage consumers to call for help as soon as possible.
6) Persistency and consistency - Good-natured pestering can help compliance. it can also make the connection between taking meds and staying well.
7) Keep hope alive - Remember that more effective drugs are just over the horizon. Communicate hope to discouraged persons.
8) Dispense kindness freely - It's the cheapest medicine of all, but many times the most effective.
You know, recovery doesn't mean getting rid of the illness, or becoming fully independent, or getting back to the way you functioned before the illness. It rarely means any of those things. What it does mean is gaining back a sense of control, a sense of purpose in life, and that means getting up in the morning and accomplishing something every day.
The most important quality in facing neurobiological disorder is a persistent belief that things will be better in the future. I want to leave you with one last story. It's the story of a person who's sense of purpose helped him to overcome many obstacles in his way. Here's a brief description of his life: He lost his job in 1832. He was defeated for the legislature in 1832. He failed in business in 1833. He was elected to the legislature in 1834, but he lost his fiance to death in 1835. He had a breakdown in 1836. There were no hospitals then and no treatment. He was defeated for speaker in 1836. Then he was defeated for his bid for congress in 1843. Was elected to congress in 1846, but then lost the nomination bid for congress in 1848. He was rejected for land officer in 1849. Was defeated for the Senate in 1854. He lost the nomination for the vice-presidency in 1856, and was again defeated for the Senate in 1858. But in 1860, Abraham Lincoln was elected president of the United States.
They didn't call him "mentally ill", they called him "Mr. President." Lincoln once wrote, "Always bear in mind that your own resolution to succeed is more important than any other one thing." Our resolution will make more recoveries possible. With better medications, services, and lessened stigma, the recovery vision we share will transform darkness into light, pain into joy, and despair into hope. We will all be better because of it. I'd like to thank you for listening; you've been a great audience, and I hope you have a great convention. Thank you very much.
Posted by DJ Jaffe on behalf of the Alliance for the Mentally Ill/Friends and Advocates of the Mentally Ill.