Medication: The foundation of recovery
by Edward G. Francell, Jr.
Ed Francell suffers from manic-depression and has served on the Board of Directors of numerous mental illness organizations. (Mr. Francell is a social worker).
For many consumers, proper medication management can provide the necessary foundation for recovery from neurobiological disorder (mental illness). Among the issues that affect medication management are compliance, coercion, rehabilitation opportunities, education and support, and medication effectiveness. While a collaborative approach helps maximize medication effectiveness, this approach must be taught by providers to both consumers and families and continuously supported. Stigma and public ignorance are influences that inhibit recovery and medication compliance. Education and experience through skilled guidance and support for medication management allow consumers to build progressive recoveries and establish meaningful lives.//
The role of psychotropic medication in recovery has been debated ever since its effects were first observed in the 1950’s. At first, it was thought that medication was an all-inclusive cure for neurobiological disorder (mental illness), but it soon became apparent that drugs were not enough to effect complete recovery. However, for many consumers with schizophrenia, bipolar disorder and neurobiological disorders, medication is often a required intervention. Proper medication management can often make a tremendous difference in a consumer’s life (Weaver, 1992). It is now apparent that skills that increase medication compliance reduce hospitalization and disrupt recovery less (Robinson et al., 1986; Corrigan et al., 1990; Kelly et al., 1990). While it is important to focus on strengths, it is also important to acknowledge illness–imposed limitations and how they can be addressed through somatic interventions. Well-developed medication management skills can often provide solid foundations for recovery, foundations that will become stronger as more effective medications become available soon.
Although I am a social worker by training, I sometimes hear questions like, “Why don’t you go into psychiatry?” or, “What’s a social worker doing talking about medication?” These questions reflect still common stereotypes that psychiatrists only deal with medication and social workers avoid it. Some psychiatrists I have worked with (particularly younger ones) take more of an interest in areas other than medication, like vocational rehabilitation, housing, and other non-somatic interventions. Likewise, while I am interested in housing and vocational opportunities, I am also interested in optimizing medication and have made comments regarding this area in treatment team meetings. This is reflective of my consumer experience, which involved many different drugs before I found an effective combination.
Many consumers still think of psychiatrists as glorified gurus of medication, so there is no need to learn anything or ask questions. All one has to do is “pop pills” and see the “shrink” every so often. The term for this kind of thinking is called /passive recipiency/, and it can stifle recovery. In my experience, recovery began when I got off the bench and became an active player in the treatment game. Often, one needs guidance and patience to make the shift from spectator to player.
Responsibility for collaboration and information exchange lies with both the consumer and the provider. Because I am not a doctor, I never tell consumers to raise or lower dosages or stop medications. I do encourage questioning, though, and being honest with doctors, and tell consumers to do that all the time. Psychiatrists should also be honest with consumers; the consumer should know what medication is for, possible side effects, and possible benefits. Most consumers with schizophrenia are capable of understanding that dopamine is a chemical in the brain and that too much of this chemical can cause problems in thinking straight. Sometimes, I even describe antipsychotics as “soaking up” excess dopamine, even if it is technically imprecise. How complex the description is depends on the ability and education of the consumer. Basic knowledge, repeated over time, can help a consumer see why he or she is taking medication and that his or her disorder has a biological basis. Most mental health consumers, including those with schizophrenia, are capable of learning these facts (Hayes & Gantt, 1992; Sullwold & Herrlich, 1992).
In traveling the long road from ignorance to knowledge about medication, I found that medication issues break down to about five categories. The main issues as: (1) /compliance/, (2) /coercion/, (3) /rehabilitation/ (4) /education and support/, and (5) /medication response/.
When I got anxious and paranoid a few months before graduating from high school, I did not even know that psychiatric patients took medication. I kept looking for the couch in the psychiatrist’s office, but I found out quickly you had to sit up and eyeball the doctor. I moved in and out of the hospital from about age 18 to 22, and “field tested” about 10 drugs in the process, until a second opinion found me a stabilizing medication. It was then that the slow process of recovery actually began.
I have been seen as paranoid schizophrenic, bipolar, and major depressive. I am currently diagnosed with bipolar disorder and panic disorder with agoraphobia, a diagnosis combination one consumer has described as, “Depressed maniac with the heebie geebies.”
When someone does not comply with a request, our first reaction is often anger. We focus on the act of refusal and pay little attention to the reasons behind it. Soon, however, in order to understand the refusal and come to terms with our anger, we have to find out the reasons behind it. The reasons for psychotropic medication refusal are many and often intermixed. The first step in helping someone attain compliance is learning as much about these reasons as possible.
People of all intelligence levels and with all medical illnesses refuse medication. When I refused psychotropic medication on occasion, I thought I was right, but now I realize I could have been wrong. Yes, non-compliance is often frustrating, it often disrupts recovery, and it often makes a trip to the hospital more likely. However diseases like diabetes, hypertension, and others have compliance problems, too. Reviews say that compliance among patients with hypertension, for example, is only about 50% (Hasford, 1992). Ask any physician who treats this disease how frustrating non-compliance can be.
Compliance problems can be roughly divided into three categories:
- 1) Errors due to the illness
- 2) Side effects and,
- 3) Errors due to lack of education.
Most of these categories overlap to some extent.
Errors due to the illness
A common error is believing that one is not ill, and particularly in paranoid illnesses that there is some kind of persecutory “plot,” although some patients may suspect something is wrong that they cannot put their finger on. Awareness of illness, or insight, seems to be affected by both biological and psychological factors (Kane et al., 1983; Heinrichs, 1985; Amador et al., 1993). At one point when I was ill, I thought medication was a placebo or sugar pill, but it never became poison, so I took it. I believe part of this thinking was due to the illness itself, and part due to the fact that nothing had succeeded in preventing my decompensation.
What can be done about errors due to the illness? Forced treatment should be used as a last resort, but not discarded altogether. For those not in dire 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 will talk about it later.” Then we talk about something neutral, like listening to music, the weather, etc. After gaining some trust, I talk about medication again, but if the person says, “There you go again,” I back off and try to gain more trust. Sometimes, the person agrees to give medication a try. This is consistent with the approach psychiatrist Ron Diamond advocates, who has written an excellent piece on moving non-compliant consumers towards medication (Diamond, 1984a).
Refusal may not make sense, but finding out the reasons why can help. Arguing often leads nowhere. Saying something like, “If you do not take meds, you will decompensate and end up in the hospital” has a blaming ring to it; it may be better to say, “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.).
A small amount of consumers tend to become very agitated and possibly violent off medication. An agency I worked for had a number of consumers become quite agitated upon stopping medications, and necessitated the use of outpatient commitment–where the patient is required to stay of medication or can be returned to the hospital. Properly used, this exists as much for the consumer’s protection as it does for the protection of those around him or her.
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 is 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 will never know what it means.”
I once knew a consumer with schizophrenia who had a lot of restlessness, or a side effect called akathisia, who made the greatest statement about side effects I have ever heard. He said, “When I look good, I feel bad. When I look bad, I feel good.”
Although I have experienced many side effects from psychotrophic medication, two effects stand out as particularly troubling: dystonia and akathisia. Dystonia is a drug reaction that can be very subjectively unpleasant, 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, and made me feel helpless, rather like falling into quicksand. Akathisia is to psychiatric patients what nausea is to cancer patients–it is 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 cannot feel the positive effect of the drug, and sometimes it can make a bigger impression on you than the symptoms of the illness.
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 (Van Putten, 1974; Awad, 1992; Kahn et al., 1992). Tardive dyskinesia, on the other hand, is sometimes irreversible and can cause concern among consumers and families.
On the other hand, medications do have positive effects. Antipsychotics reduce or eliminate hallucinations or delusions, and mood stabilizers and anti-depressants can allow persons to live essentially normal lives. I have been helped by drugs in all classes, but overall we should be able to do better. Some effective medications now in use, including chlorpromazine, imipramine and lithium, started out as accidental discoveries.
Clozapine has made psychiatry re-evaluate the impact of side effects. Compliance with clozapine, even with regular blood draws and side effects like sedation and drooling, has consistently averaged over 80%, sometimes as high as 95% (Jewart, personal communication). In one study, 11 clozapine non-responders were asked why they continued taking the drug, with ten out of the 11 indicating that the lack of side effects was the major reason (Meltzer, 1992). Dr. John Ratey of Harvard described successful clozapine response as “a guided missile that goes right to the site of aggression in the brain without making patients stupid, apathetic, or non-sexual.” (Kotulak, 1993).
Consumer’s subjective feelings while taking psychotropic medication, especially persons with schizophrenia, were often disregarded, but now is being re-evaluated. In a recent article, a psychiatrist noted that, “The patient who experiences a less favorable . . . response and the noncompliant patient may be one and the same.” (Awad, 1992). For ten years, I have talked to consumers with all major neurobiological disorders and their experiences with medication. As a result, I firmly believe that the reduced side effects and increased effectiveness of new drugs will result in no less than a revolution in compliance in the next 10 years.
Errors Due to Lack of Education
There are other common reasons for non-compliance and strategies to deal with them. One is stopping the drug because one does not feel sick, a common reason high blood pressure patients stop medication. Other reasons are risk-taking, fear, not knowing what medication is for, and for persons with mania, enjoying their “highs,” and stigma (Geller, 1982). For these errors, education has great corrective power, with some people only needing to be told once; while others need to be told repeatedly that stopping medication makes decompensation more likely. Sometimes, persons with bipolar disorder say, “I finally realized that the highs can be destructive, too;” such a person I knew with bipolar called medication compliance, “Depolarization.”
People also refuse medication because of stigma, as underestimated factor in non-compliance. 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 did not 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.” Although consumers disagree among things such as psychosocial interventions, housing options, the role biology plays in “mental” illness, and involuntary treatment (to name a few), there is virtually unanimous agreement among consumers that stigma adversely affects recovery (Leete, 1988; Smith, 1990; Frese, 1993). How we have failed to deal with it properly and a suggestion for reducing it deserves attention here.
It is going to do little good to improve consumers’ functioning with more effective medications if they are sentenced to live in a prison of public ignorance. Unfortunately, that is exactly what we have now, and we are losing millions of research dollars because of it (Flynn, 1987; Hyler, et al., 1991). I know of no college fraternity or sorority that raises money for schizophrenia, or of any athlete whose favorite charity is neurobiological disorder. I also constantly wonder how much wealthy individuals would give to neurobiological research if they knew the need. I fail to understand why we put up with this level of ignorance; it is a disgraceful situation that parallels the disgraceful treatment of persons with neurobiological disorders (Torrey, 1988).
The National Institute for Mental Health has developed plans for schizophrenia research, children and adolescents, and services (NIMH, 1989; NIMH, 1990; NIMH, 1991). They seem to be good plans. However, with all the stigma and ignorance around (which, by the way, is mentioned frequently in each plan), I would have thought a plan for public education would have 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. (Gershen, 1990). That in one-fifth of what animal rights groups spent. 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 is called the “You get what you pay for rule.” The quantity of appropriate mental illness services is directly proportional to the quantity of public education efforts.
In order to become a priority, we need media saturation. Some recent television movies about mental illness have been accurate and educational. However, AIDS and drug abuse did not become national priorities because they were the subject of a TV movie every two years, they became national priorities because they made the news every night. The news coverage for neurobiological disorder will probably 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 is 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 a few million dollars each for a national campaign of public education. Such a campaign should include a national fundraiser, like a walk or jog, that virtually every other illness advocacy organization (cystic fibrosis, kidney, leukemia, muscular dystrophy, etc.) conducts. The reduced stigma might result in more people seeking treatment, and more money raised for research or services. Also, perhaps some of the 99% of persons in this country who have 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.
Sure, the suggestion is controversial. Some persons say we will “sell out;” we will be co-opted. But to those opposed to this I would ask, “Where will the money come from?” We have to remember that tackling the massive problem of stigma and ignorance requires a massive effort, and that effort takes money. Allowing stigma to continue because of unfounded fears of co-optation is irrational and counterproductive. We must keep in mind that if the prison of public ignorance is not torn down, it will continue to keep people from seeking treatment, cost us research money, and suppress recoveries (Francell, 1994).
The subject of involuntary treatment evokes heated and polemic debates. Experiences with involuntary treatment are often negative and have resulted in many consumers’ unequivocal opposition of it. On the other hand, persons caring for severely psychotic consumers contend that the consumer’s decision-making ability is impaired because of the illness. As someone who has worked with very ill persons, I also know that violence or agitation can sometimes 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 would not have. I was put behind a locked door when I did not want to be–I did not feel sick. However, as a social worker, I have had to wait for a court-ordered medication, too, and I understand the agony of watching someone suffer. Contrary to popular belief, psychosis can be a state of great suffering.
If persons opposing all forms of involuntary treatment spent time with very ill persons, they would see what impaired judgment is all about. Studies have indicated that a majority of consumers involuntarily treated later realize the need for this intervention and are positive towards it, particularly if treatment is effective (Kane et al., 1983; Bradfor et al., 1986; Toews et al., 1986; Schwartz et al., 1988; Adams & Hafner, 1991). Of course, reasonable protections need to be built into the process. But ill people have a right to treatment, too.
Since much has been covered in the literature about psychiatric rehabilitation, I will just mention a few points about the interaction of medication and rehabilitation. Without a chance for appropriate housing, vocational training, or other activity and support, a good response to medication will not amount to much. The more support we provide a person in this area, the better he/she will respond. Having scheduled daily activities helps reinforce medication taking. When a person has nothing to do, time loses its meaning and things like eating meals, sleeping, and taking medications all get disrupted, so it is important that a person develop a schedule.
I have 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 a good reason for sticking with treatment; indeed, 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 had my own room, which gave me a sense of pride to keep it in halfway reasonable shape (Although, my parents would probably disagree with that statement). Then I got my own apartment, which was another self-esteem boost.
Education and Support
An extremely important area for optimizing medication management is education and support for both consumers and families. Look in many hospitals and you will find a diabetes education center, with education playing a central role in the management of this disease. Patients and their families suffering with diseases like cancer, arthritis, hypertension, alcoholism, etc., often stroll out of the hospital or doctor’s office with bundles of educational material.
A few years ago, I bought a drug reference book which helped me optimize my medication treatment. After discovering a potential medication with several risks to it, I went to my doctor and said, “I would like to try this drug. I think it would help.” I was turned down; it was not a first line drug, I was told. Instead, the doctor gave me another drug that worked O.K., but made me suicidally depressed. I then vowed to visit every psychiatrist in the city until I found one who would give me a chance at that original medication. The first doctor agreed, and almost all my remaining symptoms were eliminated. I paid about $23 for that book, which was about one-sixth the cost of a 50 minute session with a psychiatrist, and the benefits I received were incalculable.
The story of Lori Schiller and her battle against schizophrenia is a dramatic example of consumer self-help. (Bennett, 1992) Lori Schiller requested Clozaril after reading about it. I think this shows the importance of listening to consumers, because even in very ill states, many consumers have a passionate desire–I should say a /desperate/ desire–to get better. I am 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 slowly re-learn basic social and living skills. 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.” I responded by thinking, “Oh, that’s true,” so I did. I had to learn how to open up to people more; to relearn social skills like making friends, asking women out for dates, and laughing. My mother recently told me that for several years after I got ill, I did not 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. The learning process was slow and often uneven.
Neurobiological disorders often involve confusion and memory problems. Strategies that can help with medications 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 accidentally found it helped my thinking and memory. I am 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. Drinking or street drug use for anyone with a neurobiological disorder usually makes your recovery go backwards instead of forwards.
My mother helped me a lot with my recovery, including medications. She had been a psychiatric nurse for about 20 years before my illness, but that did not prepare her for everything. However, she gave me crucial supports that accelerated my recovery, such as articles and books about my illness. At first, I threw them in the corner of my room, primarily out of anger at having to deal with the illness, but eventually I read them, after realizing that knowledge was going to be my ticket to a better life.
Also, whenever a medication or symptom problem arose, she told me to call the doctor’s office /immediately./ For example, lithium once cause me to drink so much water it was backin up my esophagus and I was literally drowning. I wanted to stop the drug, but she referred me back to my doctor, who lowered the dose and the problem went away. Now I tell consumers to call their case manager or doctor right away, and not to wait; and that you do not necessarily have to throw the pills away to reduce side effects.
There were other important interventions that helped, too. When I was agitated or extremely distressed from side effects or the illness, she remained calm. She was also persistent in encouraging medication taking–some people call it “bugging”–and although I tired of it at times, it did make a difference. Whenever I go home now, I have access to her office, which is a gigantic education center, with tons of articles, books, and videotapes on neurobiological disorders. Of course, she still tells me to brush my teeth and comb my hair, and I usually respond now by stating my current age along with, “I think I have got it by now.” I tend to accept these statement as some kind of “biological parental programming.”
Another valuable tool I have found is support groups, although, it can take a while to find a group that feels comfortable. I have belonged to support groups for years, and we talk about different topics, including medication. It is great social support, and it helps keep you compliant (Diamond, 1984b). There are support groups for schizophrenia, bipolar, panic, obsessive-compulsive disorder, depression, and others that meet at clubhouses, churches, and hospitals.
Both consumers and families have a keen interest in being informed about medications. For example, the 700 members of the consumer network in Georgia have been polled the last two years to determine their top five priorities. Two years ago, medication education was the #5 priority, and last year, it was #2. Whenever I talk to NAMI members, medications are a popular topic, and NAMI work-shops on new medications are always “standing room only.” Some of the most popular and useful information I disseminate is medication information.
There are useful medication guides for consumers and families, but one in particular stands out: it is called /The Essential Guide to Psychiatric Drugs,/ by Jack Gorman, M.D. (Gorman, 1991). It costs $14.95 (paperback) and contains easy-to-read descriptions of neurobiological disorders and most of the drugs used to treat them. It is also helpful for case managers, nurses, general practitioners, and members of the general public. Several years ago, with the help of this book, I wrote down all the medications I have been on, including the ones I am currently taking. I listed the drug, when I took it, the major side effects, and rated the overall response. This list, which contains about 20 drugs, prevents duplication and lets me know what has worked and what has not.
My advice to consumers and families is to get your hands on anything and everything about neurobiological disorder. The more information you know, the better you can put the illness in perspective. To me, bipolar disorder is not what I am, it is 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 medication I am taking has some interactions with other drugs–this is exactly the same type of tag that persons with diabetes and hypertension wear. Viewing a neurobiological disorder as a disease that can be controlled is very consistent with the strength’s model of psychiatric rehabilitation.
There is one other very important medication that is one of the best medicines of all: It is called /kindness/. The people I will never forget in the mental illness system are the ones that treated me like friend or family. You do not always get rewards for being kind, but it does last, and besides, it does not cost anything. I vow as a provider to dispense kindness freely, because I remember what it meant to me, and also because it is in short supply in the mental illness system.
A successful response to medication can be an important point in recovery–it often marks the point at which the process of recovery begins. Indeed, the beginning of my recovery began when I found a medication that finally worked. Although the primary disability was controlled, I had to deal with secondary disabilities, namely, the years lost to the illness, the loss of friends, societal stigma, and the pain of being ill itself. These disabilities can be more heart-wrenching than the illness itself. A consumer once wrote, “Even if medication can free the . . . patient from some of his torment, the scars of emotional confusion remain, felt perhaps more deeply by a greater sensitivity and vulnerability.” (Anonymous, 1986).
Most of the time, the best vocational rehabilitation, 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, a battle that took up an extraordinary amount of energy. When a person responds to medication, he or she can stop fighting themselves (or fight themselves less) 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 is going to happen.
It has been observed that if a person stays on medication after a first psychotic episode, a chronic course may be less likely to develop, particularly in the psychotic disorders (Talan, 1993). Each psychotic episode may weaken the effect of medication. It is speculated that some people who stop lithium no longer respond when restarted on it (Post, et al., 1992). Therefore, long-term compliance may become more important than ever.
My experience as a psychiatric social worker has convinced me that the medications we have, particularly for schizophrenia, have shortcomings. It is tremendously discouraging to faithfully take a medication and still feel miserable, and/or end up decompensating. I saw treatment resistant consumers in the hospital being tried on two, three and four antipsychotics with little response, often followed by the phrase, “We will 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 clozapine on a very limited basis, although about half the consumers there could have benefited from it. I also encountered consumers endlessly waiting for clozapine at the V.A.
A neurobiological disorder can be like perpetual childhood, a kind of roller coaster ride that suppresses maturity. Although my family supported me greatly (and still does), at times when I was symptomatic I occasionally heard the phrase, “It’s like living with a five year old.” I cannot really blame them for that–or myself for that matter. Sometimes interpersonal deficits resulting from the illness make consumers appear selfish or manipulative, but instead of blame, consumers should receive help in these areas (Diamond & Factor, 1994). A psychiatrist said that when clozapine patients respond, “The long-standing immature personality that had been struggling to be healthy, but could not because it kept going crazy–is freed. They start to grow up.” (Kotulak, 1993).
Hope is an essential part of recovery. A psychiatrist recently told the Indiana AMI that the drugs developed in the next five years will work 10 times better than clozapine. New approaches that may significantly affect symptoms are being uncovered (Perl, 1993; Oyewumi, 1994). I look at the research and treatment of schizophrenia like a jet plane flight: Prior to the mid 50’s, we were flying up in the air with no real direction. When chlorpromazine (Thorazine) came out, we headed in a direction, but still did not know quite where we were going. When clozapine (Clozaril ) came out in the late 80’s, we started our initial descent, which occurs at a point 20 minutes from landing. We are now on this final approach, and although we still do not know where and how we are going to land, it is becoming clearer every day. Other serious neurobiological disorders are on the last leg of their flights, too.
To optimize medication treatment, a consumer must be willing to expend effort in collaborating with providers and collecting new information. Families must do the same. Providers can help consumers and families become collaborative agents in the treatment process. A summary of important principles I have learned regarding medication management is as follows:
- 1) Become educated/ — Collect information about existing drugs, side effects, and new drugs. Get a medication guidebook (The Gorman book is particularly recommended) and ask about different medication options. The more you know, the less fears about medication you will have. This will open up more options, and generate more hope for the future.
- 2) Take advantage of a support group/ — Do not go it alone. Support groups give chances to compare notes and provide support for medication issues. Some clubhouses have medication support groups or general support groups that discuss medication issues.
- 3) Be honest with your doctor and take responsibility — /If you are experiencing problems, tell the doctor; do not cast yourself as a burden. Be truthful about symptoms and side effects — a collaborative approach requires honesty and assertiveness. The more candid you are about your needs, the more likely they will be addressed.
- 4) Remember, medication is not an all or nothing thing — /If you are having intolerable side effects or starting to get ill, remember that dosages can be changed with the doctor’s help. There are other medications that can be tried, too. More and more treatment programs are offering education on identifying prodromal symptoms.
- 5) If you have a medication problem, call your case manager or doctor immediately — /Do not wait until a problem gets out of hand — act quickly. If you are a family member, friend, or provider, encourage consumers to call for help as soon as possible.
- 6) Persistency and consistency — Good-natured pestering can help compliance. It can also help reinforce the connection between taking medications 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 is the cheapest medicine of all, but many times the most effective.
Recovery does not mean getting rid of the illness, or becoming fully independent, or getting back to the way you functioned before the illness. Its real meaning is not any of those things. What it really means 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. Psychotropic medication can play a key role in attaining this stability. The most important quality in facing neurobiological disorder is a persistent belief that things will be better in the future–it is this hope that drives recovery, and better services, including medication, can provide this hope.
Whether we are consumers, family members, providers, advocates, or a combination of those, it is important to keep in mind that many obstacles exist on each individual’s road to recovery. It takes persistence from the consumer and those around him or her to succeed at this process, just as it takes persistence to manage any illness. Abraham Lincoln’s life illustrates the kind of persistence and faith that is needed in this endeavor; it is the story of a person whose sense of purpose helped him to overcome many obstacles in his way:
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. He was elected to Congress in 1846, but then lost the nomination bid for Congress in 1848. He was rejected for land officer in 1849. He 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, he was elected President of the United States. They did not 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 to succeed will make more recoveries possible. Those who have recovered or witnessed recovery from neurobiological disorder can forge their vision of recovery into a living reality for others. 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.
Ed Francell suffers from manic-depression and has served on the Board of Directors of numerous mental illness organizations.
Adams, N. H., & Hafner, R. J. (1991). Attitudes of psychiatric patients and their relatives to involuntary treatment. /Australian and New Zealand Journal of Psychiatry, /25(2), 231-237.
Amador, X. F., Strauss, D. H., Yale, S. A., Flaum, M. M., Endicott, J., & Gorman, J. M. (1993). Assessment of insight in psychosis. /American Journal of Psychiatry, /150(6), 873-879.
Anonymous (1986). “Can we talk.” The schizophrenic patient in psychotherapy. /American Journal of Psychiatry, /143, 68-70.
Awad, A. G. (1992). Quality of life of schizophrenic patients on medications and implications for new drug trials. /Hospital & Community Psychiatry/, 43(3), 262-265.
Bennett, A. (1992, October 14). Back from Hell: Lori Schiller emerges from the torments of schizophrenia. /The Wall Street Journal./
Bradford, B., McCann, S., & Merskey, H. (1986). A survey of involuntary patients’ attitudes toward their commitment. /Psychiatric Journal of the University of Ottawa, /11(3), 162-165.
Corrigan, P. W., Liberman, R. P., & Engel, J. D. (1990). From non-compliance to collaboration in the treatment of schizophrenia. /Hospital & Community Psychiatry, /41(11), 1203-1211.
Diamond, R. J. (1984a). Increasing medication compliance in young adult chronic psychiatric patients. In B. Pepper & H. Ryglewicz (Eds.) Advances in treating the young adult chronic patient. /New Directions for Mental Health Services /21 (pp. 59-69). San Francisco, CA: Jossey-Bass.
Diamond, R. J. (1984b). Utilization of patient expertise in medication groups. /Psychiatric Quarterly, /56(1), 13-19.
Diamond, R. J. & Factor, R. M. (1994). Treatment-resistant patients or a treatment resistant system? [editorial]. /Hospital & Community Psychiatry,/ 45(3), 197.
Flynn, L. M. (1987). The stigma of mental illness. In A. B. Hatfield (Ed.), Families of the mentally ill: meeting the challenges. /New Directions for Mental Health Services, /34, (pp. 53-60). San Francisco, CA: Jossey-Bass.
Francell, E. G., Jr. (1994). What mental illness needs: Public education and a new name [editorial]. /Hospital & Community Psychiatry, /45(5), 409.
Frese, F. J. (1993). Twelve aspects of coping for persons with schizophrenia. /Innovations and Research, /2(3), 39-46.
Geller, J. L. (1982). State hospital patients and their medication–do they know what they take? /American Journal of Psychiatry,/ 139(5), 611-615.
Gershen, H. (1990). /A guide for giving/. New York: Pantheon Books.
Gorman, J. M. (1991). /The essential guide to psychiatric drugs/ (revised ed.). New York: St. Martin’s Press.
Hayes, R., & Gantt, A. (1992). Patient psychoeducation: the therapeutic use of knowledge for the mentally. /Social Work in Health Care, /17(1), 53-67.
Hasford, J. (1992). Compliance and the benefit/risk relationship of anti-hypertensive treatment. /Journal of Cardiovascular Pharmacology, /20(Suppl. 6) 830-834.
Heinrichs, D. W., Cohen, B. P., & Carpenter, W. T., Jr. (1985). Early insight and the management of schizophrenic decompensation. /Journal of Nervous and Mental Disorders, /173(3), 133-138.
Hyler, S. F., Gabbard, G. O., & Schneider, I. (1991). Homicidal maniacs and narcissistic parasites: stigmatization of mentally ill persons in the movies. /Hospital & Community Psychiatry, /42(10), 1044-1048.
Kahn, F. M., Munetz, M. R., Davies, M. A., & Schulz, S. C. (1992). Akathisia: clinical phenomenology and relationship to tardive dyskinesia. /Comprehensive Psychiatry, /33(4), 233-236.
Kane, J. M., Quitkin, F., Rifkin, A., Wegner, J., Rosenberg, G., & Borenstein, M. (1983). Attitudinal changes of involuntarily committed patients following treatment. /Archives of General Psychiatry, /40, 374-377.
Kelly, G. R., Scott, J. F., & Mamon, J. (1990). Medication compliance and health education among outpatients with chronic mental disorders. /Medical Care, /28(12), 1181-1197.
Kotulak, R. (1993, December 15). New drugs break spell of violence. /Chicago Tribune. /Sec. 1. P. 1 Col. 1.
Leete, E. (1988). A consumer perspective on psychosocial treatment. /Psychosocial Rehabilitation Journal, /12(2), 45-52.
Meltzer, H. Y. (1992). Clozapine–pattern of efficacy in treatment–resistant schizophrenia. In H. Y. Meltzer (Ed.), Novel Antipsychotic Drugs. (pp. 33-46). New York: Raven Press.
NIMH. (1989). /A national plan for schizophrenia research: Panel recommendations /(DHHS Publication No. ADM 88-1570). Washington, DC: U.S. Government Printing Office.
NIMH (1990). /National plan for research on child and adolescent mental disorders: A report requested by the U.S. Congress./ (DHHS Publication No. ADM 90-1683). Washington, DC: U.S. Government Printing Office.
NIMH (1991). /Caring for people with severe mental disorders: A national plan of research to improve services. /)DHHS Publication No. ADM 91-1762). Washington, DC: U.S. Government Printing Office.
Oyewumi, L. K., Vollick, D., Merskey, H., & Plumb, C. (1994). Famotidine as an adjunct treatment of resistant schizophrenia. /Journal of Psychiatry and Neuroscience, /19(2), 145-150.
Perl, R. (1993, April 24). Food for thought: fats could contribute to mental illness. /Atlanta Journal, /Sec. E. p. 1. Col. 1.
Post, R. M., Leverich, G. S., Altshuler, L., & Mikalauskas, K. (1992). Lithium-discontinuation-induced-refractoriness: Preliminary observations. /American Journal of Psychiatry,/ 149(2), 1727-1729.
Robinson, G. I., Gilbertson, A. D., & Litwack, I. (1986). The effects of a psychiatric patient education to medication program on post-discharge compliance. /Psychiatric Quarterly, /58(2), 113-118.
Schwartz, H. I., Vingiano, W., & Perez, C. B. (1988). Autonomy and the right to refuse treatment: Patients’ attitudes after involuntary medication. /Hospital & Community Psychiatry, /39(10), 1049-1054.
Smith, B. (1990, November 11). City man perseveres in struggle with mental illness. /Fort Wayne Journal-Gazette./
Sullwold, L., & Herrlich, J. (1992). Providing schizophrenic patients with a concept of illness. /British Journal of Psychiatry, /161(Suppl. 18), 129-132.
Talan, J. (1993, Fall/Winter). Tracking the virus that may trigger schizophrenia. /NARSAD Newsletter. /(pp. 10-11).
Toews, J., el-Guebaly, N., Leckie, A., & Harper, D. (1986). Change with time in patients’ reactions to committal. /Canadian Journal of Psychiatry, /31(5), 413-415.
Torrey, E. F. (1998). /Nowhere to go: The tragic odyssey of the homeless mentally ill. /New York: Harper & Row:
Weaver, M.D. (1992). The importance of good training in mental health. /Community Support Network News, /Center for Psychiatric Rehabilitation. p. 10.
Van Putten, T. (1974). Why do schizophrenic patients refuse to take their drugs? /Archives of General Psychiatry, /31, 67-72.