Dear Reader, if you’re happy with your relationship with the “mental health” industry, no judgement — be safe, and godspeed. But if you want to leave the system, achieve a safe and guided withdrawal and get your “lifelong” diagnosis officially removed, like I did, the following guide might stimulate some effective action. Like with many of life’s challenges, having excellent re$ources could potentially gain these results more quickly, but the most important elements are attitude, awareness and strategy. Think Sun Tzu’s Art of War.
The most important thing I learned is that “lifelong” isn’t. It’s negotiable. Unless you’re in the throes of “danger to self or others” (which is a separate, important discussion), everything else in psychiatry should be negotiable too. Once you pull that thread of absolutism, the whole sweater unravels.
The goal here is Full Moral Status — “a stringent moral presumption against interference” — for psychiatric clients. This involves achieving:
1) Client safety in real time
2) Parity in the treatment process, a primary voice at the table
3) Objective, qualified, scheduled reviews regarding diagnoses and treatment results, requiring report of all side effect complaints in every appointment’s clinical notes. Clients must sign off on that sheet.
This is a big one. Currently, side effects are barely mentioned. Denial is entrenched as policy. Being told what I had suffered was ‘rare’ and ‘unusual’ made it no less real and ugly. As manufacturers must list the dangers of the drugs, prescribers must prioritize informed consent and detailed attention when side effects occur.
This third objective will serve to protect the client and build a case for further actions directed towards achieving additional safety.
Tools for change, in no particular order….
- Language; the industry’s vocabulary and their meanings. When they’re used and how they’re used; and the impact on your records. Bigger impact on how you think of yourself and the system through adopting into practice at every contact.
- Behaviors; self-control while drugged, adopting proven sales techniques, tactical self-assertion.
- Information; learning their bureaucratic systems, creating your own. ‘Wearing a wire’, contemporaneous notes, legislation, policies and handbooks, identifying allies and enemies, paperwork and organization. Understanding the power of carefully building a case.
Some of these actions might seem contrived or like ‘acting’. They are.
In everyday life, you put on different ‘game faces’ all the time. This one will be the most important and it only lasts about an hour at a time. With practice and small victories, you will begin to enjoy it.
Your appointment is a business meeting.
Approach it as a collaboration even if it currently is not. Be clear about your expectations in this regard, but don’t argue. Hold them to any concessions they toss your way. Initially, you will have to manage your expectations, always building towards a goal.
Be the expert in behavioral health care that you are.
In an appointment, you’re the smartest person in the room. You literally know everything on the subject at hand. They only know what you tell them. Learn what you don’t know about drug effects and dangers, bureaucratic procedures, policies, state statutes (what they’re supposed to be doing for you), etc. It’s your brain and the rest of your life. Take responsibility for your care; you can’t trust them to prioritize your safety. That notion is incongruous with the prescriptions.
You must cap your emotions and chill. Believe me, I know how hard that is when drugged, sick, angry, and scared. I failed on the regular at first.
Safety issues should be the only acceleration in your delivery and even then, you will have bigger impact staying calm but emphatic. If things start getting away from you, say “I don’t feel safe regarding (fill in the blank).” The word safe has important weight to them legally. Use it thoughtfully. But don’t back down on safety… ever.
IRONY ALERT: ‘style points’ count a lot with these guys; substance, not so much. It’s the business of behavioral health, not “Deep Thoughts.” I fell short for years because I was consumed with managing side effects, not pushing a safety-first agenda. I had to find another gear to develop, strategize and implement tactics; self-control on the drugs was my biggest obstacle. I failed until I didn’t.
If you know administrative procedures before you go in (and you should) and are recording (and you should, see below), you can slow… it… all… down. That is to your great benefit.
You’re drugged. Assume they’re not. Think more before speaking, carefully self-editing, and don’t rush to fill silences. Talk less, listen more; they are always showing their hand. Pay attention and learn the ‘tells’.
Use a recorder.
Here’s some great advice from Sun Tzu in The Art of War:
“Never interrupt an enemy when they’re making a mistake.” Again, talk less, listen more. Most appointments are ‘med checks’ that resemble a pit-stop but are crucial to your safety. You can make strong points in your file always discussing the drugs that are assigned or presently taken. This will not be in their file. This simple tactic is cumulative and very powerful later.
Check your state statutes/laws for legal recording permissions. And then record anyway. Per your statutes, it may or may not be admissible evidence. Regardless, it’s an invaluable teaching tool for you, regarding your behavior. It will supply notes/transcripts for theirs. I highly recommend the Sony ICD-PX333. Tell no one for plausible deniability purposes, if applicable.
Listening back to my appointments helped me correct my approach. Occasionally it caught a giant mistake of theirs, but rarely the ‘home run’ you might think you’ll get; ultimately my responses taught me more. Recording gave me a sense of calm; I didn’t pressure myself to ‘get’ everything in the moment… I was drugged and unwell, a considerable handicap in important conversations regarding critical brain care. I still brought speaking notes. The recorder leveled the playing field.
Parallel, concise, contemporaneous written notes will reinforce your position in any storm that will find you. Store them all in your PC or get organized with a simple plastic file box and dedicated notebook and folders. Get copies of everything you sign. Everything… even as they tell you “you don’t need it’” — especially those. Keep neat and organized files; they will come in handy.
Be your own imaginary lawyer: dispassionate, prepared for every appointment, and focused.
Emotion is not a tool for progress. Should it come to legal action, you will have a neatly constructed evidentiary case… and credibility per your own behavior. But don’t count on suing anybody, in any way, for anything, as a viable option. Never utter the words lawsuit or attorney. It sounds impotent and threatening, no bueno for you. Negotiation is the realistic and attainable goal as most legal actions of any kind are usually negotiated, never going to court. Talking about lawsuits sounds amateurish and weak; their legal might will always trump yours.
You will have real currency and leverage for negotiating a favorable outcome on many issues. The more credible you appear with an abundance of curated evidence, the more attention and gravitas they will bring to negotiations. Style matters… you’ll also have substance to back it up.
Every contact you have with the system is being dissected and recorded in some fashion. It becomes the only record and final word on your treatment, if you don’t participate. You don’t need their permission. Ostensibly, they should welcome your collaboration in your own health care. They will agree but they won’t like it. Their handbook or mission statement says they will, I guarantee it… find it. If you get resistance later, specifically identify it, quietly reference their published statements and ask them to clarify, you’re confused. Don’t try to win points, you’ve already made yours. Sincere face, please.
When the important moments come along, you must counter with concise evidence, not feelings and opinions. Nobody cares. It’s ineffective. This is the adult’s table. It is imperative that you have a contemporaneous, parallel, corresponding appointment file of your own, containing observations and facts, editing the emotions tightly in your writing. Lose the ‘shoulds’, the ‘unfairs’, the ‘unprofessionals’; I guarantee, if you study the handbooks and statutes defining their roles, it’s a matter of memorializing their behaviors and speech and comparing. This is a major tool establishing your pattern of stable, rational behavior and restoring your credibility in the face of inappropriate actions of theirs.
Credibility is Job #1. Without credibility, nothing changes.
Be the adult they don’t expect you to be; it’s your appointment. Own it… graciously and with quiet confidence. If this doesn’t come naturally to you, it will come with practice and homework.
You are a client, they are service providers; they should earn your regard and trust.
Have high standards and never, ever apologize for them. It’s your brain. What could be more important when insisting on excellence?
In psychiatry, talk is cheap and dangerous. Beware efforts at infantilization; they will be subtle and relentless.
Patient is a submissive, vulnerable term, describing the afflicted. Client is a position of strength, a boss. I was nobody’s patient except my doctor’s (and only if I felt like it). Staff may resist and call you their patient; politely smile and correct them, “I prefer client, thanks.” They will float ‘team’ by you. Ignore it. They’re your employees, private or publicly funded.
They will attempt to ‘friend’ you, a manipulation to make you uncomfortable with saying ‘No’ to them. Women are especially raised to be ‘pleasers’; be self-aware. You have goals, so do they… and your safety is nowhere on the short list, unless you self-harm; then the scramble to limit all liability ensues. This is the business of mental health.
Don’t bite. You’re drugged, you’re not in a coma.
You don’t have to answer every question they ask.
Be a thoughtful, invested participant. Be cooperative if they’re reasonable; if they’re not, explain your position briefly and quietly. Choose what you want to discuss. Learn to control the tempo. If they bring pressure for immediate answers and there’s no emergency, say you will think about it further and get back. You are serving notice.
The best power move in business, as appointment time ends, is to pause, stand up and thank them for their time, pre-empting their dismissal, explaining that you’ll see them soon with a big smile. You have just taken control and ownership of the appointment. Be very polite and respectful. Be quietly confident, even if you’re not.
These are small but effective sales techniques; subtle, non-aggressive behaviors, slowly establishing a certain dominance. It’s a form of mirroring and all effective salespeople employ it. You don’t have to flex them at every appointment, just when you think they’re forgetting whose appointment this is. Be alert, engaged, and edit your words.
Understand that language is the power in psychiatry just as it is in the law.
When you start speaking more formally, less casually, you are perceived differently, with more credibility. You are instantly elevating your status, you have more power.
Learn their language, like learning french in France. The terms in their vocabulary are words that you might think you know. What they mean and what you hear are often two very different things.
These terms are the common language used in meetings and discussions about you and in your file. Understanding what they mean when used by doctors or staff is essential. They are wildly inconsistent. It’s extremely important that you begin to incorporate them into your language and your corresponding file correctly. Be comfortable with their meaning inside the industry, not what you think they mean and what they should mean according to you.
The following terms can be dangerous. Pay attention when they’re used.
- Substance Abuse
- Mental health
- Self esteem
Here are some familiar favorites…
A Salute to “APPROPRIATE” — the Swiss Army Knife of words.
This is one of the most powerful terms in psychiatry, not depression (I know, hard to believe). It was used as filler frequently, yet I always felt a little chastened somehow. And then I got it. It’s part of the parent/child paradigm, infantilization.
It can soothe, open doors, deliver a hard check in a velvet glove. It’s objective and situational, specific and generalized. It’s serious, sober, mature, even-tempered, calming, moderating, corrective, scolding AND ironic. It makes the user sound like a rational adult; reasoned and controlled, regardless of what BS they’re serving. I observed it having an almost magical effect on the listener. I tried it and it worked the first time. Whoa!
The industry peppers their speech with it. Use it right back. They are uncomfortable when that happens but can’t protest. You are asserting yourself in the best way possible.
It can lead and persuade, reassure and be enigmatic, just hanging in the air. Let it. Learn how to use it effectively, it has tremendous power. Initially, use it a lot, and be aware of the effect; it builds confidence. You will quickly learn how to use it surgically.
Euphemism for irrational anger, a weaponized word. To them, your expression of anger, however appropriate, will always be characterized as a threat, recorded in your permanent file. Make sure you are appropriate. Ask why they used it. Don’t argue, take mental notes.
This is ridiculous (and dangerous) in its ubiquity. It has become meaningless and far too powerful at the same time.
When they comment “You seem depressed,” take a moment. Anything you mention, a canceled dinner date or a big electric bill, will be the justification for that word. Offer substitutes, careful corrections like: quiet, thoughtful, listening, interested, disappointed.
Depression is a default word in their lexicon and it’s comprehensively damning.
And BTW, depression does not necessarily lead to suicide, but they don’t want to be held liable if that’s going to happen. (If that IS going on, please completely ignore this guide, chapter and verse.)
Another term that is meaningless and dropped into every appointment and your files just because. It’s filler. Make them be very specific if they use it and explain it carefully to them if you use it. Don’t let them label you ‘defensive’ because you want clarification. Defensive is like agitated; be careful, it could lead to a pejorative report and additional sedation. It is inflammatory chum and designed to spark a denial. It is an implied threat. It is a scold and manipulative, warning you to be more agreeable. Don’t bite; stay calm, ask for an explanation (don’t repeat the word) or just don’t respond; ignore it.
This is used carelessly; everybody has different parameters. If they use it, ask them what they mean and listen up. If you’ve done any homework, you’ll recognize that they don’t use it correctly. Most use it as a synonym for ‘agitated’ or ‘angry’.
Don’t argue if they use it with you. You’ve just learned something valuable about them. It’s used to curb people and mute them with an implied threat of… more drugs. Be careful, you don’t want this in your file. That’s easy: slow things down. Discuss the term, asking for specific justification and listen. “I disagree with that characterization” should do it. Let it end there and make clear notes later.
Full Moral Status: An Outline for Change
Based on my experiences and the information gleaned observing and talking to thousands of people around me for 11 years in the psychiatric industry, I feel strongly about developing a Full Moral Status Resource Clearinghouse (or Hub) for Behavioral Health Clients who face a variety of challenges ‘on-the-ground’, when navigating bureaucratic and procedural obstacles pursuing safety and a voice in their behavioral healthcare. Ideally, it will be 100% free of pharma entanglement and political influence (excepting full-throated support), with clear separation from existing industry-supported ‘advocate’ agencies and organizations. Distilled: an appropriate seat at the table regarding diagnosis and treatment.
Unless and until there is an informed, unconflicted oversight entity with teeth, consumers must effectively organize to protect their interests, both short-term and long-term. The immediate short term is the first priority for this oversight entity.
Safety, parity, and availability of qualified assessments, reviews, and meaningful appeal procedures regarding diagnoses and treatment plans, coupled with significant requirements vis a vis real informed consent for prescriptions and record keeping regarding side effects are the goals to achieve Full Moral Status.
The resource hub I envision will be designed to build a parallel, patient-based file using industry terminology specific to the particular circumstances; insurance companies, management companies, contracted providers, state statutes and regulations. Included will be appeal procedures including significant on-the-record responses and notations regarding treatment decisions, side effects, and patient goals.
It will be in a uniform format with progressive steps and ease-of-use guidelines to assist in editing and effective communication with the industry, with the client’s safety and real collaboration and transparent dialogue the only goal.
On a state-by-state basis, beginning with the most populated, legislation, statutes, vendors, and medical oversight standards and policies that affect mental health care will be referenced into a database. Identified vendors and insurer’s specific policies, coverage, and options will be notated along with current relevant contacts; i.e: ombudsmen, customer/client services, regional representatives.
Establishing credentials in the psychology/counseling, legal, and legislative community is essential, in addition to some ‘resistance’ organizations. A strategy to reassure these important entities of our informed, credible, thoughtful presence in the mental health community is essential. An open, transparent approach to the mental health community represented by psychiatry is also important. Resistance is anticipated and should be diplomatically, respectfully countered. It should not deter our actions. They will have to earn credibility through consistent actions that put client safety first and always.
Some of the nuts and bolts:
- Website presence, newsletter, info-seminars, and target marketing describing our goals and supplying contact info will announce our presence, our mission, and who may benefit. It will also unambiguously define our limitations.
- Help interpreting handbook rules, guidelines, statutes, grievance procedures, and language used in documents clients are required/requested to sign; second and tertiary tier contact suggestions; offering suggestions for strategy, tactics and speaking points; follow-up ‘charting’ for client’s own files, and follow-up with agencies.
- Forms authored with a careful eye towards legal appropriateness (however broad), and offered for a variety of issues, i.e., on-the-record insertions and addendums to client’s files; statements that counter treatment decisions; client’s incident reports; contesting characterizations by staff, prescribers, and doctors; and side effect reporting, including reference to real-time history (time spent) with medical workers in question.
- Consequential assessments and statements are often developed by individuals who have little or no prior relationship with a client yet are afforded significant credibility influencing future treatment decisions. A timely rebuttal or counter is imperative and must be entered along with the initial report.
- Regional resources that may include safe, effective advocate organizations; legal assistance; state clearinghouse and troubleshooting agencies; and legislative representatives who are informed, established by earlier contact, and who understand and support our mission.
- ‘Hotline’ guidance for bureaucratic challenges met when attempting to ensure safety and an equal voice in treatment, including direction to information that will assist the client’s own research and progression through their specific system.
- Strict boundaries around providing medical advice or emotional counseling of any kind. We must be crystal clear that crisis intervention is NOT what we are formed to respond to — the support offered will be for bureaucratic and administrative issues relating to safety, language and process. Training must be provided for handling “danger to self or others” crisis-initiated contact with responsible policies that have client safety as the first goal.
This proposed magic kingdom won’t solve every problem; it can’t be everything for everyone. This is a newly-birthed outline based on what I could have used to my advantage during my years of internment. Providing tangible support and guidance for individuals navigating a byzantine, obstacle-riddled, bureaucratic jumble — while drugged and possibly sick and frightened — is the goal.
The client or their support system will have to invest some or a lot of sweat equity into creating a safe and improved quality of life until the medical experts on appropriate behavior begin behaving appropriately. Until then…
Clients can achieve Full Moral Status by being informed and modifying certain behaviors, usually for an hour at a time; definitely do-able. It restores confidence, dignity, and credibility, resulting in options… and maybe a ‘get out of jail’ card, if that’s your goal.
It will be contentious and messy and worth it.
Many are familiar with the following quote by Mahatma Gandhi. It sustained me as I shouldered the burden of going it alone:
First they ignore you.
Then they laugh at you.
Then they fight you.
Then you win.