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Reclaiming your power during medication appointments with your psychiatrist
By Patricia Deegan, Ph.D.
Meeting with a psychiatrist during “medication appointments” is usually a very disempowering experience. The meetings usually last for 15 or 20 minutes. During the meeting we are expected to answer a few perfunctory questions and to leave with prescriptions for powerful drugs that can dramatically alter the quality of our lives. In these meetings the psychiatrist assumes a position of power and we usually fulfill the expected role of being a quiet, unquestioning, passive patient. Subsequently we will be praised for merely being compliant or scolded/punished if we fail to comply with prescribed medications. Over the years I have developed a number of strategies for changing the power imbalance during medication meetings with psychiatrists. I would like to share some of these strategies with you.
Strategy #1: Learn to think differently about medication
There are no magic bullets. Recovery is hard work. No pill can do the work of recovery for me. If I sit back and wait for a pill to make me better, I will not get better. If I patiently wait for a drug to cure me I may become a chronic, helpless patient who swallows pills on command, but I will not recover. Recovery means taking an active stance towards the problems and challenges I face.
Medications are only a tool. Psychiatric medications are one tool among many other tools that I can use to recover. Physical exercise, eating well, avoiding alcohol and street drugs, love, solitude, art, nature, prayer, work, and a myriad of coping strategies are equally important to my recovery.
Using medications is not a moral issue. There was a time when I thought using medications was a sign of weakness or that people who no longer used medications were better than I was. I no longer think this way. There is no right or wrong way to recover. What matters to me is taking care of myself in such a way that I have a chance to become the best person I can be. There are periods of time when I do not use medications and there are times when I do. It is a personal choice that I make.
Learn to use medications. Today I do not simply take medications. Taking medications implies a passive stance. Rather I have learned to use medications as part of my recovery process. Learning to use medications within the recovery process means thoughtfully planning and following through with medication trials, medication reductions and/or medication withdrawal.
Always use medications and coping strategies. There are many non-drug coping strategies that can help alleviate symptoms and distress. Take the time to learn strategies for coping with voices, delusions, paranoia, depression, obsessive thinking, self injury, flashbacks, and so forth. I have found that learning to use a variety of non-drug coping strategies helps to minimize the amount of medications I take or, with practice, can actually eliminate the need for medications.
Learn about medications. It is easy to feel intimidated by all the big words and technical jargon that get used about psychiatric medications. However, there are a number of ways that I have found helpful in getting reliable and accessible information about the medications I am considering using. I am careful to ask the psychiatrist I am working with about the medication he/she is prescribing. However, I often find this information insufficient. A great source of information is talking with other people who have used the drug. Perhaps the cheapest and easiest way to get more information is to ask a pharmacist who will give you a written fact sheet describing what the drug is supposed to do, what the unwanted effects are, and precautions including drug interaction information. These drug fact sheets are written in nontechnical jargon, but unfortunately leave out a lot of detail that might be important to you. If this is the case you can always ask your pharmacist for drug-insert information. The drug-insert information is essentially the same information that is contained in the Physicians Desk Reference (PDR). It is printed on a small roll of paper and inserted in the box of medications that the pharmacist receives. There is a lot of technical jargon in the insert but the information is more thorough than the fact sheet. In addition you can go to the library and use the Taber’s Cyclopedic Medical Dictionary to look up words you are not familiar with. There are also a number of good books that can help you get answers to your questions. These include Clinical Psychopharmacology Made Ridiculously Simple (John Preston and James Johnson, published by MedMaster, Inc.) or Instant Psychopharmacolgy (Ronald Diamond, published by W.W. Norton) or Toxic Psychiatry (Peter Breggin, published by St. Martin’s Press) or Natural Healing for Schizophrenia ( Eva Edelman, published by Borage Books, Eugene Oregon) or Living Without Depression & Manic Depression (Mary Ellen Copeland, published by New Harbinger). If you have access to the Internet there are lots of resources including these:
Strategy #2: Learn to think differently about yourself
Trust yourself. You know more about yourself than your psychiatrist will ever know. Begin to trust yourself and your perceptions. Sometimes I found it hard to trust my perceptions after being told that what I felt, thought, or perceived, was crazy. Part of recovery is learning to trust yourself again. Even during my craziest times there was a kernel of truth in all of my experience. If you are experiencing unwanted drug effects such as a feeling of apathy, constipation, loss of sex drive, double vision, or the like, trust your perception. Don’t let others tell you that such side effects are “all in your head.” Check with the pharmacist, or with friends who have used the drugs, and check the books or the Internet. Chances are that you are not the first person to have these drug effects.
It’s your recovery. Too often I have heard people say that “the drug made me feel better.” Don’t give all the credit to the chemical! Even if you found a drug helpful, look at all the things you have done to get well and stay well. A drug can sometimes open a door, but it takes a courageous human being to step through that door and build a new life.
Your questions are important. Anyone who has been on psychiatric drugs for a period of time is probably going to ask these important questions:
What am I really like when I am off these medications?
What is the “real me” like now?
Is it worth taking these medications?
Are there non-drug methods I can learn to reduce my symptoms instead of using medications?
Have my needs for medications changed over time?
Do I have tardive dyskinesia that is being masked by the neuroleptics I am taking?
There are no long-term studies on the medication I use. Am I at risk? Do I want to take the risk of not knowing the long-term effects?
Am I addicted to these medications?
Has long-term use of these medications resulted in memory loss or decreased my cognitive functioning?
There is nothing crazy about having such questions. What is unfortunate is that most mental health professionals do not recognize that these questions are to be expected. A recovery oriented system would have detox centers and other supports available so that people could plan a rational withdrawal from medications in order to explore these important questions.
Strategy #3: Think differently about psychiatrists
Most psychiatrists are too busy for our own good. We would be wrong to assume that most psychiatrists have a thorough knowledge of their clients’ treatment history. In an age of managed care psychiatrists have less and less time to spend with more and more clients. Many psychiatrists have never read the full case record of the people they prescribe medications to. Even fewer could identify all of the various drugs and drug combinations that you have tried over the years and what the outcomes of those drug trials were. In light of this I have found it important to begin to keep my own record of what medications I have tried, for what symptoms, at what dosages, and for what period of time. Whenever a psychiatrist suggests a new drug or a new dose, I always check my record just to be sure it hasn’t been tried before. I don’t want to repeat ineffectual or even harmful drug trials.
Psychiatrists often have conflicting interests. It would be comforting to think that psychiatrists were serving our individual interests. But this assumption would be naive. Many psychiatrist complain of the competing interests that tear at the ethical fabric of their practice. Especially if I am working with a psychiatrist who is part of a managed care system, I feel it is important to ask what, if any, caps on services he/she is working under. In other words, some psychiatrists receive their paychecks from managed care corporations that require them to prescribe one type of drug rather than others that are expensive. If this is the case, we should have this information!
Sometimes psychiatrists are wrong. Most psychiatrists do not encourage us to seek second opinions regarding diagnosis, medications, or other somatic treatments such as ECT. However, at certain times I have found it important to seek out a second opinion. Even with a managed care plan or if you are on Medicaid or Medicare, it is possible to get a second opinion on an issue you deem important. It can take a lot of work, phone calls and even a friend to help advocate, but it can be done and you are worth it!
Psychiatrists are not experts on everything. Most psychiatrists believe in the primacy of biology. Most have a mechanized and materialist world-view. Thus, chances are that if you have a diagnosis of major mental illness and you talk to your psychiatrist about ecstatic spiritual experiences, mystical experiences, psychic abilities, or similar experiences, these will be perceived as crazy or symptomatic. One way of taking back your power is to recognizethat you have control over what you share with a psychiatrist and what you choose to keep private.
A meeting with a psychiatrist need not be a confession! Talk with mystics about your mystical experiences. Talk with psychics about telepathy, etc.
Strategy #4: Prepare to meet with your psychiatrist
Set your agenda for the meeting. I have found it important to set my agenda for a meeting with a psychiatrist rather than simply reacting to what he/she does or does not do. In order to set an agenda it is important to define your immediate goals. Possible goals might include starting medication, discussing a medication change, planning for a medication reduction, planning for a medication withdrawal, checking for tardive dyskinesia, finding a solution for unwanted drug effects, or reporting on a medication trial. Try, if possible, to set one goal for each meeting.
Organize your thoughts and concerns. I have also found it important to prepare ahead of time for a meeting with a psychiatrist. I have developed a form that helps me organize my thoughts and to put things in writing. A copy of this meeting preparation guide is available through the National Empowerment Center.
Be specific. The more specific we can be about our concerns, the more control we can exercise during a meeting with a psychiatrist. For example, if a psychiatrist begins a meeting by asking, “How is that new medication working?” a vague answer would be “Oh, it’s helping a little I think.” Imagine how empowered you would feel if, instead, you were able to answer, “Well, before I began this medication trial I was so depressed that I missed seven days of work, spent 14 days in bed and lost 3 pounds. But during the last two months, since starting the drug and using the new coping strategies, I have only missed 2 days of work, have regained the weight I lost and I have only spent 4 days cooped up in my apartment.” Notice how this level of specificity puts you squarely in the driver’s seat of your life and positions the psychiatrist as a co-investigator, as opposed to being the authority over your life. Getting this specific may sound difficult, but it is not. It simply requires that you learn how to record your medication and/or self help trial on a daily basis and that you summarize this information before seeing your psychiatrist. A guide to recording your medication and/or self-help trial is available through the National Empowerment Center.
Write your questions down. Write your questions down before seeing your psychiatrist. Bring the questions with you to the meeting. My experience is that these meetings can be stressful and that having my questions written down allows me to relax a bit. If you are considering trying a new medication, be sure to ask the following questions:
Exactly how will I know if this medication is working for me?
How long before I should start to notice an effect from this medication?
What are the unwanted effects or side effects associated with this drug?
If I should experience unwanted side effects, what should I do about it?
How can I contact you if, during this medication trial, I have questions of concerns I want to check out with you?
Role-Play. Sometimes it can be helpful to role-play with a friend or someone you trust before seeing your psychiatrist. Learning to talk to a psychiatrist from a position of personal power is a skill that can be learned and must be practiced. Be patient and give yourself time!
Strategy #5: Take charge of the meeting
Bring a note pad and pen to the meeting. Most of us have had the unnerving experience of talking to a psychiatrist while he/she busily jots notes that we never get to see. Bringing your own note pad and pen, and taking your own notes is a good way to break the habit of being a passive patient. It gives you something to concrete and active to do while in the meeting. Writing notes can also help you remember important points.
Tape-record the meeting. I can get very anxious when meeting with a psychiatrist and thus a lot of information passes by me. I have tape recorded meetings so that I can listen to them afterwards and pick up on the information I may have missed. I have always asked permission before recording. Although some psychiatrists don’t feel totally comfortable with the idea (they fear lawsuits), all have agreed to it when I explain why I am taping the meeting.
Announce your agenda at the beginning of the meeting. If you have done your meeting preparation work, then you know what you want to get out of the meeting with your psychiatrist. There have been many times when I bring two copies of a one-page, written statement of my agenda, concerns, and observations to the meeting. I hand a copy to the psychiatrist and begin the meeting by reading my statement out loud. My experience has been that most psychiatrists initially object to my starting this way. They are accustomed to starting meetings with their own agenda, which is usually vague and centered on the notion that they will observe me for significant clinical signs and symptoms while I answer the questions. But if I insist on beginning the meeting with my statement and assure them they can talk later, I find they soon come to understand the value of my preparation. In fact, some of the psychiatrists I work with keep the copy of my agenda and statement and add it to the clinical record. For a sample copy of an opening statement, contact the National Empowerment Center.
Bring a friend or advocate. Many people bring a friend or support person when they see a dentist or have a physical exam. It makes sense to bring a friend to a meeting with a psychiatrist, especially when you are first breaking out of the role of passive patient and are learning to reclaim your power.
These strategies have worked for me. Together these strategies have helped shift the balance of power between me and the psychiatrist I am working with. Perhaps some of these strategies will make sense to you. I am sure that you will come up with your own strategies as well. What is important is to realize that you can take your power back and become the director of your own recovery and healing.
Download a free information packet with a guide to meeting preparation, organizing your own medication/self-help trial, and a sample meeting agenda statement.