Editorial Note: This is the fourth in Krista Hartmann’s 4 parter on changing her medical records. See part 1, part 2 and part 3.
On Becoming an Articulate Hand-Grenade
Psychiatric strategy and tactics are based on faith-healing, replete with speaking in tongues (language), fortune telling (promises of happiness), and snake oil (drugs). Their model is the ABC’s of selling; “Always Be Closing”…quiet compliance and enlistment, the goal. They know what’s best for you.
Beware infantilization; it is endemic in psychiatry.
You must recognize the existence of your own powers; develop them, know when opportunity presents, and stand ready to act. The harder I worked preparing, the luckier and more confident I became.
Whether or not you are firm in your belief that you have been misdiagnosed or you need to improve your position in the system (private or public health) by establishing a more equitable, responsive, and safe ‘playing field’ (you define safe), insight regarding how you are perceived and how you present yourself is crucial. Language and subdued but resolute behavior will help achieve this. Being drugged during an anger spike, however justified, is a handicap you must train yourself to compartmentalize. It will not advance your cause, it will set you back. You will be perceived as inappropriate, irrational, and threatening. Your chart will be ‘red flagged’ and they will never forget it.
Clearer communications regarding your goal to be collaborative (more power/influence) in your treatment will lead to improved control over your quality of life. If your provider doesn’t agree and, more importantly, behave consistently with that in mind per your expectation of them, it’s time for a change. You might have to kiss a lot of frogs before you get a winner, but here is nothing more important.
This is not an adversarial-minded approach; knowledge brings confidence (and chill), trust is ill-defined in this industry and…you are drugged, a decided disadvantage representing yourself at the best of times, but especially should something go ‘left’. Remember there’s nothing more important than your brain health; your caregiver should concur and encourage your participation and self-advocacy and prove it every day, earning your trust.
A few suggestions… Tailor this to your own application.
- Language: Trust should be earned through actions, not words. Talk is cheap. Learn how to separate them. Listen carefully; they will always have intent, a destination for you in mind for every contact. You will be able to spot it easily with a little quiet practice. Talk less; listen more. Their words are full of ‘tells’. Self-control is imperative; emotional, angry outbursts will set you back and might lead to sedation. I know it’s hard on the drugs; you’ve got to learn not to react so fast. Breathe, you can do this. Qi Gong and Tai Chi helped me enormously.
- Shift your thinking; you are a client purchasing services from a provider. I approach my primary care doctor this way also; respectful, but with expectations of a certain standard of behavior towards me and his services. He’s not a bad guy, but I have gently checked him at times. He noticed and we continued. They are service providers, like a mechanic, dry cleaner, or landscaper. This is a business relationship and there is a quid pro quo implicit in your relationship. Standards and quality matter to YOU, the purchaser/client. You have an absolute right to ask for and receive them.
They are more important as it is health care, which justifies your high expectations of their performance. It matters not at all that you might be on Medicaid or Medicare, old, young, male or female. They understand that your ‘head count’ is significant towards their paycheck. All money is green and spends the same way. BTW, NO ONE will like this POV to varying degrees. Only use it if things get aggressive, gently reminding them of their role. The awareness (in your mind, where it counts) will clean or remove the Dr. God Goggles that some folks wear.
STAFF are NOT ‘medical’; gently remind them if they roam outside their boundaries. Using the word “team” does not change things. You are not their patient. You are a client. They are staff. Don’t be belligerent. I was NOBODY’S PATIENT except my doctor’s. If others push back, calmly explain that you feel more comfortable with those terms. Be respectful, adult, and the client who is talking to a service provider. Don’t be snarky, bossy, bombastic. That will be their cue to label you as AGITATED, DEPRESSED, TROUBLED, often their default. Es no bueno for you. They should drop it. If they don’t, pay attention to their response. Silently. Review it later, it will be invaluable.
Don’t get stuck in an argument trying to be ‘right’. You will have served notice that a shift (of power) is afoot. They will note it, discuss it among themselves, and ‘observe’ you further, approaching you with a new tactic…good.
You have another baby step forward to better care and being regarded with respect, an adult, and a paying customer.
- You should be logging/journaling/recording, EVERY SINGLE CONTACT, however seemingly insignificant. They will be. Research your state laws. If it’s allowed by law, it’s evidence; if not, it helps you form a strategy. DO NOT tell them you are doing this, ever. One of the best tools I had was my little Sony PX333 pocket recorder. I dropped convos into my PC storage. It wasn’t so much recording ‘gotcha!’ evidence, it was the playback later, when I could listen and analyze in my home. I listened hardest to myself; what I should have done, said, behaved to better effect…next time. Listening to BS and provocation ‘in-the-moment’ was much easier for me after that. It had a decided calming effect; I didn’t feel I had to take the bait every time they ‘chummed the waters’. Know that you are (at least) on film when you enter the building.
- Know your handbook and receive copies of EVERYTHING YOU SIGN for your provider regarding permissions, mental health standards, policies, mission statements; what they require of you, what they promise to deliver. Highlight, post it, bring it with, if you deem it necessary, I brought it for every appointment once I formed a strategy. I rarely had to brandish it; they could clearly see it in my (deliberately) slightly-too-small handbag. It is surprisingly easy to follow for you, not so much for them. It will be a very valuable tool. It’s a business contract and you can hold them to every, single, thing…should you need to. Copies of all paperwork go into a dedicated file folder at your home. Stay organized.
- Slow the convo down. Even under time restrictions, you must begin to slow things down. This will give you time to formulate a careful, honest, but thoughtfully worded response. When you start, the reaction might be variations of: “What’s wrong, is everything OK, you seem a little depressed, is something bothering you, do you understand what I said? Be sincere when you carefully respond with “no, I’m fine, I’m just thinking, that was an interesting comment you made, let me think and we can talk about it next time, et al. If you make them more comfortable with YOUR pace, you have started to assert your power as a client; a first significant step.
Being able to ‘cue’ your exit before you are dismissed is a ‘power’ move; not hostile but assertive and confident; gamesmanship used everyday in the business world because it’s effective. Things will start to change. There might be more verbal ‘probing’; if so, you might say “You seem uncomfortable. Is everything OK?” (to them). You could say that you have been thinking about your relationship and feel that it would be healthier for you to become more pro-active and collaborative in your treatment. If they don’t respond with “That’s great!” (not necessarily meaning it is OK… for now), LISTEN carefully to what comes next. “Are you upset with me” is a trap unless you can dispassionately, diplomatically make suggestions that will genuinely support your comfort level. If they aren’t sincere when agreeing, you will hear a little snark from them someday. Their feelings got hurt.
If they don’t get over it, move on; ‘lack of chemistry’ should be your only explanation when requesting change (stick to that answer no matter what). Should they press for details say “A service provider/client relationship in healthcare is an important but delicate intangible; sometimes it’s comfortable, sometimes not. It didn’t work out”” They might respond “Do you not feel ‘heard’? You; “Well, sometimes, maybe; I’d like to try this” might be a good start. “I hope we can work on that”, by either one of you is good. If you are pressed for details on “HOW”; put it off until next time unless you already have some brief bullet points, pulling them out of your handbag or pocket. Your interviewer will be raising their eyebrows (in their minds). Be sweet, be chill, be friendly, a little smile. YOU are welcoming THEM into YOUR collaboration. It’s YOUR appointment. Be inviting, gracious, alert. You are not going to ‘solve’ this stuff in one appointment. As they like to say “It’s a process”.
- You don’t have to answer EVERY question they ask. Hold your emotional cards a little closer to your vest (hard when drugged). Ask them one instead; it can be about a term they used “I’m confused, what do you mean by that word, I’ll have to think about that, I don’t know, I’ll get back to you with a little thought, we can discuss this further next time”.
If they say “What do you think that word means?”, you have just heard one of the creepiest, most insulting manipulations in life; psychiatry should be ashamed of that transparent BS, but it is just more patronizing, fishing tactics to infantilize you. It’s what you say to a 6-year old and a teenager…for a reason. Repeat respectfully “I’m not sure, You used that term, please explain it to me”, etc. Don’t feel it necessary to respond when they’re done. “Oh, I see” is a little enigmatic and good for your position.
Here are some important terms. When I heard these, I either asked for clarity, or noted it, used it later to my advantage, or found a formal definition. Sometimes you are going to look under some obfuscating, muddy rocks to get to the essence in this list. I found most are use pejoratively with an unsupported judgement. It was my experience that criticism and negative ‘observations’ flowed like wine. Positives were perfunctory and given less weight.
This language will be in your file; upon review of my files for 10 years, I found that what had transpired and what was written were often depicted in a very different, negative light. I can only come to a conclusion it was ensuring job security and justification for prescribing, and sustained recruitment. I was shocked and then it broke my heart a little, as I had trusted these individuals to have my best interest as a priority. I had been a perfect client; wide open with my thoughts, never missed appointments, cleaned up and prepared for my meetings, financial, housing, employment stability, no emotional crises, just drugs, and most importantly, 100% drug compliant for 9 years. It was never enough. The clinic notes invariably found something to criticize; it was staggering. This is why language is everything…and your contemporaneous notes/recordings.
Be subtle, non-combative, chill. Don’t try to be the smartest, toughest, angriest person in the room. Choose to be the adult. It is all cumulative.
NEVER, EVER THREATEN A LAW SUIT OR MENTION LAWYERS. You are perceived as ridiculous, desperate, impotent, and agitated.
If you’re able to find an attorney to represent you, ensure it is on contingency; you win, they win. Present yourself as calm, rational, with an excellent grasp of the facts and timeline. Lawyers are businessmen, generally not movie crusaders. They will invest in a $ ‘winner’. Mental health is a legal quagmire. You will have to prove DAMAGES with EVIDENCE, not hurt feelings, fear, or perceived procedural, medical mistakes or rudeness. If a lawyer asks you for money ‘upfront’, run.
Develop perspective. “Pain is inevitable, suffering is not.” That’s a tough one.
I’m proof that you can “Fight the powers that be.”
Vocabulary homework
*A SALUTE TO APPROPRIATE—The Swiss Army Knife of words.
This is one of the most powerful terms in psychiatry not evidence-based, clinical, or depression (I know, that last one’s hard to believe). I use it all the time. It makes me smile; I delight in its effect.
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. It can soothe, open doors, deliver a hard check in a velvet glove. It is objective and situational, specific and generalized. It is 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 your selling. 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…they know what it signals in context. You are asserting yourself in the craftiest 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. I pointed out many times, under attack (as they were wont to do), that I was behaving appropriately (make sure you are), my responses were appropriate. The powerful implication was that they weren’t, without overtly challenging them or droning on by being defensive (know when to stop). Initially, use it a lot, and be aware of the effect; it builds confidence. You will quickly learn how to use it surgically.
Too many of these terms are spoken by the industry; they mean one thing, the client hears something else entirely. They are used routinely as if they own the term; it’s in a medical context. That is often ridiculous, inaccurate, puffery. Take notice, ask questions, hold them accountable for their language. Start using their words when discussing your health.
Their words will be in your medical records, forever defining you; someone reading your file a year from now, won’t have that assessor’s IQ, GAF score, or resume’ to reference. Educate yourself.
This is why your notes are important for every appointment and that you begin to incorporate their language, as if you were in a foreign country. You want to be on their page.
- Doctor, PA, MA, social worker/Service provider- ask about their education, specialization, years of experience in a conversation so way. You’re allowed. I ask at least that much of my Nissan mechanic for my little economy car. My brain and body are a Porsche Carrera S Turbo. If your child needed a specialist, asking this would seem appropriate. It’s the most appropriate question to ask for yourself. If there’s push-back, ask why, use this comparison, quietly, earnestly…and listen hard. Look them up in your state’s data base for ‘actions’, complaints, suspensions. Check “Dollar’s for Docs” for the doctors. Know who they
- Patient/Client-Becoming a CLIENT is a position of strength. Patient is a supplicant, a passive vessel. Always refer to yourself like this. If techs, PA’s, MA’s, case managers call you Patient, gently refer to yourself as a client consistently. Believe me, they will notice. If they question you, tell them you feel more comfortable and let it just hang there, stop talking. Set high standards, expectations, budget, time, and poor staffing excuses should be questioned ceaselessly, appropriately. It’s your BRAIN.
- Agitated-euphemism for irrational anger, it doesn’t matter if your not-could get you sedated; a weaponized word. To them, your expression of anger, however appropriate, will always be alarming, in your permanent file. Make sure you are appropriate.
- Depression–Good grief, 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 disappointment with a co-worker, a canceled dinner date, a big electric bill will be the justification for that word. That is absurd and yet can mistakenly characterize you.
It lacks imagination. Human beings are far more nuanced than binary in their emotions; happy or depressed. Depression does not necessarily lead to suicide, but nobody wants to be held liable if that’s going to happen. (If that IS going on, completely ignore this)
When asked “How’s it going?”, I learned (too late) to recite ‘rainbows and kittens’, chapter and verse. I had never been irrationally depressed, just normal stuff, yet if I mentioned I had a disagreement at work or with my brother, the frown, the reach for the scrip pad, and the “I’m concerned about you” just annoyed the hell out of me coming from a case manager or my endless stream of community college-educated PA’s. It was just LIFE, the continuum, the ups and downs…RELAX.
Real depression is scary; I knew it as a side-effect, thanks……..
- Side effects-they know nothing about this subject. Like a male gynecologist telling pregnant women how they’re feeling. Psychotropics aren’t understood by the people making them and everybody who takes them experiences them uniquely.
I wanted to scream, “You take handfuls of antipsychotics and then try to tell me how I feel. I’M the petri dish. Otherwise, be quiet and listen to me, I’m teaching you something. And don’t insert ‘commonly experienced in clinical trials’. It triggers my gag reflex”. F*uck off….or whatever.
- Anxiety/anxious-another term that is meaningless and dropped into every appointment just because. Make them be very specific and explain it carefully to them. 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. They will use it as if their definition is the only correct one; understand that is always used subjectively. It is an implied threat as a negative qualifier. It is a scold and manipulative, warning you be more agreeable. Don’t take the bait; stay calm, ask for an explanation.
- Manic-Boy, do they throw this around carelessly; everybody has different parameters, most apply it to talking fast regardless of articulation and rational thought, or having ‘too’ many interests. Also, if you get angry at them, appropriately, you are manic. It’s used to curb people and mute them with an implied threat of…more drugs.
My exit doctor laughed loudly when I told him my diagnosing doctor had labeled me manic; he diplomatically implied she didn’t know what manic was. She had spoken to me for 20 minutes with sleep deprivation. He had known me for 2 years under bone-crushing stressors. I was appropriate, never manic!!! It was funny. BTW; his education was infinitely superior to hers; I looked them up.
- Suicide/suicidal ideation-According to the industry, everybody in the system.
- Phantom Networking-Despicable practice by insurers/providers ‘padding’ provider directories with phony doctor choices. In my most dire time, I called 40 (FORTY) listings; all were front desk lobby numbers of hospitals, disconnected lines, and annoyed receptionists declaring “What are we doing in that book?” When I tried getting answers from the provider, I was stonewalled and gaslighted. Finally, after months, I was offered 1 (one) other choice who never called me back.
Providers are fined for this con from coast to coast; they don’t stop, as the ‘risk/reward’ is profitable when pitching these directories to state systems for billion-dollar contracts (my state). Who’s gonna’ stop them? Legislators are desperate to push mental health quickly off their desk; “There, that’s done” and never look back.
I was desperate to leave the clinic and very sick; it was cruel. I used valuable energy and time calling them every day for weeks and months. Milo Geyelin/Wall Street Journal uncovered this hustle; I soon found a trail. Magellan, the BH management company was singled out as the most egregious.
- Recovery–WTF-Just stop using this altogether. Nobody feels comfortable defining this; it comes up primarily during contract negotiations involving statistics (manufactured by the bidder & how do you dispute a ‘concept’?) and sales pitches in general. There is no recovery in the psychiatric paradigm; why would they cut loose a revenue source? They reference the AA model defining addiction; once an addict, always an addict. AA’s not the voice of God; neither is psychiatry. The absolutes are asinine. Contemporary challenges to this notion abound.
People are capable of choices and change; with and without assistance.
The following terms can be dangerous. Pay attention when they’re used.
- Crisis
- DTS/DTO
- SMI
- Trigger
- Substance Abuse
- Stable
- Compliance
- Clinical
- Evidence-based
- Advocate/self-advocate
- Anger
- Mental health
- Counseling
- Therapy
- Aggressive
- Trust
- Acute
- Chronic
- Emotional
- Difficult
- Cooperative/uncooperative
- Concern
- Norm/normal
- Deliberate
- Ethical
- Comfortable/uncomfortable
- Self esteem
- Continuum
And finally…my regard for the psychiatric industry is capsulized by this real-life experience in Miami with my private insurance, top shelf psychiatrist-of-the-moment.
Nine months after my diagnosis, well into my homelessness and bankruptcy, I was ricocheting off suicidal ideation for Trileptal. On the way to my job, someone ran a stop sign and totaled my van, throwing me through 5 lanes of traffic. In the ER, my friend whose couch I was sleeping on, walked up to the gurney and told me to get out that day. I just laid there thinking “I have no place to go”; the most pitiful statement I had never spoken in my life. My quiet numbness increased; I was at yet another level of shock. I knew I should be crying and frantic. When I probed, I had nothing….
At my next appointment, this happened;
Dr. Pelta rocked back and forth in his big leather chair, glasses on forehead, ‘tenting’ his fingers and furrowed his brow….
“If you were “Jello”, what flavor would you be?”
I was stunned; I thought he was joking. He was not. I was embarrassed for him and a little panicky.
He waited solemnly, patiently. I finally came down on the side of lime.
To the industry; Well done.
annie says
THE DUMMIES GUIDE TO BEING DOCTORED
It wasn’t a joke…as if training a very large dog ..
If you want to make a quick buck, Krista, you should join the DUMMIES authorship brigade as your talent for seeing through the verbalising minefield is accurate and dignified and, right on, tap
The abuse came at me straight away from a profession I had previously respected, this was a new one on me. I didn’t know how to react. I had never been verbally abused and I was early 50s, a professional in my own profession.
There was no coming back from this. The damage was done.
BUT THEN …
I LEARNT
I CHALLENGED AND RECHALLENGED
I PUT ON MY SOCKS AND BIFFED AND BANGED
I KNEW MY DRUG
I WAS EMPOWERED
I COULD WRITE FACT BASED MISSIVES
I HAD ALL MY DOCUMENTATION
FOR NINE YEARS I BEAT MY OWN DRUM
Your 4, persistently engaging, jaw droppingly clever, the must have, how-to guide from Krista Hartmann, on becoming an articulate hand-grenade.
Victoria Grant says
Only now am I learning the language of “calmness” requiring one to listen more and speak less.
I am also in my 50’s and work in health care and was appalled that I too would be stigmatized by healthcare professionals I compared to gods.
Discontinuing psychotropic medications turned me into emotional jello while none of my health concerns were taken seriously. I would watch a rheumatologist google a pathology report and ask why a nephrologist was referring to lab work from 6 months ago for my 6 month checkup clearly underscoring their apathy and belief that my health concerns were a manifestation of my mental health. Imagine being the recipient of every psychiatric syndrome and the the feelings of helplessness in trying to defend your own mental health.
The psychiatrist refers to dysphoria several times in my medical charts but neglects to link the dysphoria to discontinuing an antipsychotic he prescribed in the final 3 minutes of a session; a medication he did not obtain informed consent for.
Now I have the appropriate language and know that I need to readdress a complaint regarding psychiatric care I received and this does require a legal professional. I will reclaim my mental wellness.
Mental health care providers rely on our emotional jello when complaints are filed against them and I too, will challenge and re-challenge.
I admire your strength Annie. I don’t know if I can return to work in the small health care community that dismissed my concerns in such a humiliating fashion.
susanne says
There will be so many of us wishing we had had your so valuable advice to warn us and advise how to deal with the abusive relationships ,both overt and covert, with health workers. Usually the shame associated with mental illness is passed off by psychiatrists and others as the shame of having an illness itself but what get written about as much by individuals themselves is the shocking experience of how health workers behave. It is ‘easy’ to become fearful of ‘them’ and infantalised when resistance to it is so difficult knowing what powers of incarceration, drugging and access to benefits are held by them. Many will not have had much previous experience of dealing with abusive relationships at all never mind in a ‘care setting’. There can be be much shame attached to this afterwards as well as seeing oneself act like it at the time -even when knowing consciously it is a survival strategy. The Shock of realising what you are caught up in undermines the capacity to insist on an adult relationship. One well known psychiatrist actually wrote that he regards his clients as his surrogate children – you can imagine how the power dynamic would skew things there even if he considered it benign There is a certain claim to the right of benign abuse in psychiatry – time for them to give that outdated nonsense up.To be dependent for a while is not surprising just as in any illness but that is a far cry from what goes on in psychiatry. I will pass on your words of wisdom as much as possible – the account should be read by everyone intending to work in the mental health field as well as circulated to people who need strategies for dealing with them. It shameful that so many will still be experiencing what you describe . Many thanks for writing it. My favourite colour of jello would have been vomit yellow.
Krista Hartmann says
Susanne, please forgive my belated response to your thoughtful comments.
You seem to understand what I attempted to communicate particularly regarding the insidious yet pervasive approach by psych industry/workers towards clients…the goal being LIFELONG, quiet conscription, NOT independence from the industry or whatever their definition of ‘recovery’ is THAT day.
I believe change will begin 1 fight at a time, hopefully very LOUDLY (but ‘appropriately’; joke). It has to worm it’s way into the public’s conciousness, like water on a stone. My story is a template that worked for me, made up spontaneously (over 9 ugly years; another joke).
I am anxious to change the awareness of clients that change IS achievable (but messy) AND our awareness of the LIFELONG, manipulative coercion that the ‘cult’ enforces thru language and drugs…a near impossible assault on a vulnerable client that effectively immobilizes any chance at self- determination…is something that can (& must) be refused. Options must be developed. THEIR WAY is not a 1 size-fits-all.
I have many ‘academic’ & ‘clinical’ articles & books in my personal bibliography at this point…pointing out the ‘big picture’ cancers affecting the industry. I never found a grass-roots “How to…” guide regarding a client taking effective steps to save their own life or run…that wasn’t written by the industry/system.
It’s time is way overdue.
Laur says
Doctor Healy,
Thank you for looking into this. Is there any update on the RXISK prize?
Also, a bit of hope for us:
http://www.pssdforum.com/viewtopic.php?f=10&t=2262
This woman has been healed after 10 years of PSSD!
Hope everyone is well
Carla says
How many health professionals have mental health issues and just go about behaving unprofessionally as if what they do is totally appropriate?
They conveniently shift their inadequacies onto their patients or staff? ~ definitely, a power imbalance gone out of hand.
The organizations who protect and believe certain professionals skewed stories, is just beyond my belief.
I have had stories made up about me, which are not only worrying but untrue.
I have had my mental integrity tarnished.
I have been accused of being a whistle- blower. Good!
I have had to tolerate professionals having ‘wobblies’ when I question the risks involved with meds and certain procedures ~ give me a break!
You have given me misguided information.
Unreliable diagnosis.
Perform dodgy treatment. Do I deserve this? No one does?
Treated me as if I don’t have a brain and discredit what I say.
Some of you need to get a degree on bed side manners and inoculation on how to be nice.
Perhaps, I have lost my respect for many professionals who behave like children in a school yard.
Bully, victimisation and lying do not make leaders in one’s profession.
Some patients can see straight through all the claptrap.
Spruce says
One of the more patronising experiences I had with a doctor was when I was trying to get him to believe that PSSD existed.
I handed him a letter from the MHRA which confirmed they were looking at persisting sexual dysfunction after people had come off SSRI’s. He took the letter off me, and handed it straight back to me within a second, without looking at or even glancing at the letter.
I found that very rude.
Another patronising experience I had with another doctor was when I tried to explain that the sexual side effects hadn’t gone away after I came off Citalopram.
He then went on to state to me that he thought my sex drive would come back “when I decided it would come back”.
I asked him how he was sure that this would be the case, and he seemed pleased I had asked, before replying in a self satisfied tone of voice;
“Because I am a doctor”.
Heather R says
All this sensible information is very welcome.
But, say you are a parent, watching a youngster who had little wrong in the first place, beyond anxiety and side effects to prescribed drugs, and suppose this young offspring has been rendered totally vulnerable by the medications which they didn’t really want but were subjected to till they had no verbal protest fight nor physical fight left.
How do you get THOSE Notes changed, in behalf of that young person, knowing as you do that so long as this opinionated medical rubbish is written about them in their Notes, h/she will never get their free lives back again. They may well be beyond fighting back cleverly and verbally whilst the Notes are ongoingly added to. Our son was so broken down and almost in a dream state, that he couldn’t see the ‘exit’ to save himself, he was hypnotised pretty much into believing everything they said to him, the more aggressively and damningly the better.
I applaude all that has been written here in these 3 posts on getting one’s Notes to become an accurate rendition of a two way conversation, but I still don’t see how we get rid of all the heinous past slander…perhaps we just have to accept changing what we can change and leaving those things where they are, that we can’t change however hard we try. Or have I missed something?
mary H. says
I guess, Heather, as we well know, any application made by us (parents, caring friends etc.) will have the usual result – ‘who do they think they are; this is nothing to do with them; we deal only with the patient’ – and that is the way it will remain, I fear, unless the whole system is given a real shake-up.
One innocent appointment with his GP to check out concerns he had following a college lecture on signs of depression has resulted in 15 years of hell for our son.
One mistake by that GP – a prescription for Seroxat – proved to be the young lad’s downfall.
12 years of being on the ‘helter skelter’ of MH care was a downwards spiral which saw him all but give up hope of ever getting out of the ‘funfair’ with its ‘magic roundabout’ of drugs, patient in-care and community support.
Then came the real ‘magic’ of a psychiatrist who listens and believes, encourages and praises success. What a difference that has made. He doesn’t seem to worry about what may be in his records, he seems to have put all of those worrying years in a box with a tight lid on it………..for the time being, whilst he concentrates on his withdrawal from his medications and can then return to face some of the ones who labelled him and show them how wrong they were.
Krista Hartmann says
Heather, With an acknowledgement to your position as a parent; this essay was never composed & presented to be a MH ‘one-size-fixes-all’ for everyone’s tragic experience. Having traveled in this industry everyday for 11 years, I am acutely aware that I could never be a representative for anyone but myself…client’s brains & experiences are as unique as fingerprints X a million. I have observations & opinions.
As of now, I am 1 of 2 people (that I can find, in 3 years) who shared the brutal battle for a present-day replacement of a “life-long” diagnosis. Some folks get fixed on the notion that they must make it ‘disappear’ from their past records…an exercise in futility. Getting it ‘replaced, changed, corrected,’ is language that might better be used. I never got a direct, official ‘acknowledgement of mistake & correction’…so what?
Having it dropped & replaced by my exit doctor was QUIETLY GROUNDBREAKING (for everyone in the industry); it PROVED they acknowledged “lifelong” is NOT …. in the massively important debate of SCIENCE VS SUBJECTIVE. If it was true for me, it is possibly true FOR ALL….on a case-by-case basis…an important ‘crack’ in the heretofore solid, impervious glass prison of SMI diagnoses.
These were MY steps to a kind of freedom possibly in front of me; not how to change the past. Once the crack starts, there is opportunity to weaken the ‘glass’ further, with obliteration of “LIFELONG”, the 1st goal in meaningful reformation, by others.
May I respectfully state again, you can’t change what HAS happened in life. I’m not aware of how that works. That has never been my premise.
I affected my ‘present’ AND my future. In my opinion, based on my experience, the only change possible was by MY perspective & behavior; it caused others to respond differently (in my favor) to me; manipulation (sales techniques) if u like. Informed, pro-active behavior caused bureaucratic changes, where the monster is comfortably protected.
As you state “Changing what we CAN change” is enormous; don’t rush past that thought; it is NOT A SMALL THING. I found I had to release or compartmentalize my enormous past losses, injustices, injuries & my grief. They didn’t move me forward and OUT, safely–my 1st priority.
“Leaving…things where they are” was completely unacceptable to me, even as I was ‘broken’. I MADE IT UP as I went forward-with plenty of homework on my part; “Know your enemy….” Sun Tzu. Arrogance be damned, I KNEW I was smarter than 99% of the medical workers, even drugged. My emotions WHILE drugged, was the obstacle I had to abolish. Biggly.
My perspective informed ME that, as this is apparently new ground, with ZERO assistance from established ‘advocates’, I had to write my own script. I was challanging the most enslaving & most PROFITABLE feature of mental illness diagnoses; “LIFELONG”. Like so many others, I had very little left to lose…institutionalization & death vs health & freedom…the worst that could happen was that I could fail.
I’ve never been afraid of failure….better that than Thoreau’s “a life of quiet desperation”. Frankly, ‘quiet desperation’ was an old friend by then….going over a cliff to the rocks below, was what faced me if I took a shot & missed.
“If you come for the King, you had better kill him” was my only thought.
As this did not involve MY child, I realize your perspective is somewhat different…and for me, perhaps unknowable. What I know is that changing what I could, 1 step at a time, was all I had. The drugs are unspeakable, yes; the industry’s philosophy indefensible, yes; I could only try to change WHAT WAS RIGHT IN FRONT OF ME…& live to fight on when I was safe.
I have read hundreds of patient blogs, survivor blogs, & scholarly musings on the damage, sorrow, & ‘what’s wrong with the industry’.
My opinion is that people get bogged down in the wrong semantics; FORGET ‘changing, erasing, expunging’, the past. You can’t. And there will be no apologies, acknowledgements, & meaningful reparations. You have to lick your own wounds, as people who experience all manner of horror in life try to do.
Attack the issue in the present, knowing the stacked odds; what are the rules (yes, THEY write them), how do I (on a grass roots level) use them to my advantage…it’s the first, important step to effective challenge.
Many people seem to get stuck, using valuable time & energy, railing against the unfairness, corruption, & cold exploitation in the industry. It changes nothing; not for 1 person.
Get on THEIR page; change comes from within…they never saw it coming in my case…and I was walking (very quickly) away…with everything I needed to restart my life. They never stopped trying to punish me for trying; when I succeeded, they were gobsmacked…I assure you, it has been ‘spun’ or ignored until now. I mailed 40-plus ‘invites’ to relevant doctors, staffers & management, going back to 2004, to read my ‘acknowledgement’ of their ‘contribution’ in my journey to good mental health. They all will. They are flattered…. until they get here. (Thank God for the internet=contacts)
They underestimate ALL clients. Use it to your advantage. But u have to lose the emotional response that telegraphs your intent (‘you’ve ruined my life; apologize & fix it’) & become an all-business strategist, a junior lawyer.
I have a lengthy (I know, I know) comment after #3 offering more detailed suggestions for a different kind of ‘movement’; a bureaucratic one.
Heather R says
Very sorry to have to report that The Horizon Programme BBC2 tonight, (22.8.18 at 9pm) by Dr Xand Von Tullekan, was, like the curate’s egg, only good in parts.
It was supposed to be exploring the reasons why men under 50 have such a high suicide rate. It was no doubt sincere and insightful, but there was not one word about the suicide causing effects of certain prescribed medications, RoAccutane/isotretinoin, the antidepressants, the antipsychotics etc. Indeed, the implication was that if you offer suicidal people appropriate treatment, (hinting at medication) you can make things better. Maybe for some, yes, like the guy who was bi-polar and heard nasty voices, but not for all.
The thing which I find the hardest to swallow is the constant rolled out mantra about how if only people will TALK about feeling suicidal, appropriate help is ready and waiting out there for them. I’m very sorry to say, for the nth time, that it mostly damned well isn’t. It might be for an hour or so after coaxing you down off a bridge or whatever, but it won’t be as long term as you need it, because, God forbid, you might get too dependant on support, on being listened to, of needing help to get your life back on track, and anyway, we can’t tick enough boxes for you for ‘the money (what money? 😊) to follow the patient.’
I was sad about the programme. Dr Von Tullekan did his personal best, and most contributors spoke well (apart from two words from Jeremy Hunt) but again, were the possible suicidal effects of prescribed medications not mentioned so as not to upset The Powers That Be once more. Why do the BBC make a programme like this and leave such vital elements out?
mary H says
Heather, I contacted the BBC ( as I’m sure you did) regarding the Horizon programme, explained that I found it good in parts BUT that they now need a 2nd. programme explaining the reasons why the way forward is hampered by the lack of services etc. – the very points that you raise here.
In response, the person who replied AGREED with everything that I’d said and saying that he would hope that the BBC would do a follow up along those lines ……..but asked me to accept that he does not have the last word in which topics the BBC will cover!
On Twitter, I have replied to Xander VT’s praise for the programme, stating that more tablets handed out will not improve matters and that zero tolerance of suicide cannot work until services are in place – in other words that ‘talking’ will only improve the situation when the ‘listener’ knows exactly what can be offered as support without waiting months for it
To my mind, there should have been a pre-programme about the current situation, followed then by the programme we saw and, possibly, a 3rd. one showing how this can be possible in the UK with added cash put into the work on the ground rather than creating an extra ‘upper layer’.
Although the UK father shown on the film is doing excellent work facing Parliament with his concerns, I fear that the result of that will be even more ADs being dished out…what else is available as things stand? ( I did feel that the father would have had a LOT more to say about services than the few sentences that we saw by the way!).
annie says
A severe blow to All Adults
The 7th Circuit on Wednesday said there was clear evidence the FDA would have rejected adult suicide warnings on Paxil’s label.
U.S. appeals court says GSK cannot be sued over generic drug suicide
https://www.reuters.com/article/us-gsk-lawsuit/u-s-appeals-court-says-gsk-cannot-be-sued-over-generic-drug-suicide-idUSKCN1L72D1
(Reuters) – A U.S. appeals court on Wednesday tossed a $3 million verdict against GlaxoSmithKline over the suicide of an attorney who took a generic version of the company’s antidepressant Paxil, finding the company could not be held liable for injuries allegedly caused by a generic copy.
A unanimous three-judge panel at the 7th U.S. Circuit Court of Appeals said claims against GSK were preempted by federal law and U.S. Supreme Court rulings.
The case weighing whether brand-name manufacturers can be sued for injuries blamed on generic drug versions was closely watched within the pharmaceutical and legal industries, and GSK drew support from industry groups including the U.S. Chamber of Commerce.
A lawyer for GSK during a May hearing in front of the appeals court said allowing the verdict to stand would be catastrophic and “totally upend the pharmaceutical industry.”
A jury in Chicago federal court in 2017 awarded $3 million to the widow of Stewart Dolin, a partner at Reed Smith LLP who jumped in front of an oncoming commuter train in 2010 after taking a generic equivalent of GSK’s Paxil.
Wendy Dolin filed the lawsuit in 2012 against London-based GSK, which controlled Paxil’s design and label at the time her 57-year-old husband committed suicide.
Under a 2011 ruling by the U.S. Supreme Court, generic drug companies cannot be sued for failing to provide adequate label warnings about potential side effects because federal law requires them to use the brand-name versions’ labels.
As a result, Dolin instead sued GSK, saying its Paxil label failed to warn of suicide risks among adults, alleging that the company had underreported adult suicide rates during its trial studies to the FDA.
GSK said the FDA had repeatedly refused to update Paxil’s warnings on the risk of adult suicide, despite the company asking the agency to do so. The label includes warnings on suicide risks among patients below the age of 24.
The 7th Circuit on Wednesday said there was clear evidence the FDA would have rejected adult suicide warnings on Paxil’s label.
GSK did not immediately respond to a request for comment on the decision.
Brent Wisner, a lawyer for Wendy Dolin, did not immediately respond to a request for comment.
Wednesday’s decision follows a series of state court rulings in similar cases. The top courts of Massachusetts and California ruled brand-name manufacturers could be sued by generic drug users.
However, West Virginia’s Supreme Court in May rejected liability claims against brand-name manufacturers for alleged failures to warn over a generic company’s drug.
Heather R says
I guess in saying that, despite admiring the stalwart and brilliantly focussed stand Krista Hartmann has taken against those in the mental healthcare system who did not perform as they could and should have, I do realise that this was her story and not meant to be a ‘one size fits all’ solution. I do apologise if I did not make that clear.
To get a result as satisfactory as she has, maybe depends on keeping your resilience fired up, and your self belief, determination, resourcefulness and hope at the forefront of your mind. To be able to do this when drugged up to the eyeballs, dare I say she was extremely and unusually fortunate. She also seemed able to get measured and fairly reasonable listeners in those she ‘got on her page’ which assumes she was dealing with fairly normal, albeit arrogant, human beings.
The scary bit for me is finding that some medical people in UK in positions of enormous power, (especially psychiatrists with social workers as henchmen) are sometimes seemingly frankly unhinged or playing by entirely different rules to those of decency and trustworthiness. Viewers who have followed the UK TV series Poldark might have heard the sly banker George Warleggan remark that Ross Poldark’s Achilles heel is his honesty, and his belief that others would behave honestly, ‘to the rules of decency’ as he did. “But they don’t, and this will be his undoing” mutters George with a controlling smirk.
Our son’s efforts to negotiate with his mental healthcare professionals intelligently and reasonably, he being the most logical and normally clear thinking scientist, were rendered hopeless because he was dealing with people who did not, or were not able to ( through their own arrogant stupidity) behave honourably. And when taken to task over this, which led to his death by suicide (prescripticide in fact) neither did the GMC. So, like Poldark, our son’s Achilles heel was his belief that with a fair argument, he would get a reasoned response. He got instead inane victimisation seemingly because he was too reasonable and calmly intelligent by half. He made them look riculous, without meaning to, and they then became revengeful. Other healthcare workers, embarrassed at what they witnessed, described covertly his treatment as appalling.
My worry is that there are so many briefly mentally unwell people who, when forcibly drugged up, are left too vulnerable to fight their intellectual corner, and if in addition they are dealing with the medically unscrupulous and the power-crazed, what chance have they? If they can’t get a ridiculous diagnosis expunged from their record, their future employment prospects can be permanently compromised. Their future romantic relationships are probably limited, when the words of the diagnosis becomes known to other parties they meet socially.
So maybe we have to abandon the principles of honesty and turn ourselves into Warleggans, and resort to using more manipulative means to get change, for change there HAS to be, or we allow this travesty of human rights to go on endlessly into a Third Reich. And if the media are too scared to tell the truth, just as they were in Germany under Hitler, and propaganda reigns, what avenues for change are left open to us? Now that even Wendy Dolin’s honourable triumph over GSK and the FDR can be stood on its head, what the hell can we do?
Krista Hartmann says
Heather, please don’t apologize for anything at all.
I got my results thru serendipity & the laser-like focus that almost dying brings to the table…adrenaline fueled terror.
No one was reasonable; the exit doctor was responding to me from a position of enlightened self-interest and I leveraged it. It was just a confluence of sloppy, dangerous ‘care’….& my will to save the rest of my life. I certainly didn’t know I had it in me. It took me 9 awful years to reach that turning point. When the switch flipped, I fought. If it hadn’t ‘gone my way’, I was still running…& figure it out later. But it was going to end, regardless.
I worry when I read how u are troubled by all the other things that go wrong for so many. You’ve had a profound tragedy & loathe the thought of any one else being there, I’m guessing. Me too.
I’m overwhelmed if I let myself spend too much time thinking about all of the sins of the industry; the venality I experienced. I can’t allow that.
I worked in the animal rescue business for a decade. It too is overwhelming in it’s infinite cruelty. As cold as it sounds to ‘outsiders’, it helps ‘shelter’ workers to remind themselves “You can’t save them all”.
It helps focus on saving who u can right in front of you; thinking ‘big picture’ emotionally paralyzes workers. It’s too much. You want to sit and cry or kill someone…no bueno when u have critters who need help right in front of you.
I’m impatient with how slow change will come in MH. I walk a fine line being motivated by my past and keeping the memories on a very short leash. I am 67 now & life is short….but I’ve never felt so strong, smart, & alive. I won’t give 1 more second of suffering to the bastards; but it has to have meant something in the end…which is why I seek out forums for this story. I want others to know it’s possible; it might have spurred me to action sooner had I known about someone else.
I am mindful of keeping this in an ‘appropriate’ place in my life, not allowing it too drag me into sadness. I’m all paid up on that subject for awhile. I insist on joy.
I can’t tell u not to be sad. I think it would be much harder watching someone u love suffer in that terrible place.
Tiny, simple things trained me to smile again.
Please take care.
Heather R says
‘After these posts run, and any comments on them, we’ll try to look at what can be done’…..words written by DH at the end of the opening salvo on this 5-posted subject of having one’s Notes and diagnosis managing to place permanently limiting restrictions on one’s freedom.
One will get nowhere by being sad, sitting back and worrying. And yes, Krista, one cannot take on the woes of the world and sit weeping with them. My brave and extremely clever father was an engineer, and engineers are problem solvers. This is what I admire and attempt to achieve too. I am proactive not reactive. As are the readers of these Blogs. You have to look into the problem from all angles and try to see how best it can be sorted the best way for the most sufferers. You also need, I think, to band together in ever increasing numbers, so yes, a good thing that YOU tell your story where you can, especially as you say you’ve only found one other person so far who has done what you did, using a similar formula.
The answer to the main listed problem, I feel, is to teach resilience. If we have a firm base of good sense and self reliance from childhood, we will not reach out humbly to medics and their medications for a magic amelioration of our difficulties. If we are however majorly ‘off the wall’ at any time, as my dad was when mania struck, then maybe a little medication might help, but actually it didn’t in his case because he wouldn’t take it anyway, and he was much too bright and intelligent in his arguments for ‘them’ to dare to section him. (Even Jehovah’s Witnesses eventually gave our house a miss, knowing he could defeat any argument at length). His manic depression seemed to fire his brilliant thought process and he almost appeared to know what others would think or do before they got a chance to put any plans into action. HOWEVER, If one unpicked the trauma of his life, one could so easily understand where the tendency towards psychosis came from. Babies are surely not born manic depressive but the slings and arrows of life’s outrageous fortune probably build up to such a pitch that it possibly gets thrust upon some of them.
So, surely we need to be looking at this another way. Removal of power from psychiatry, substituted with resurgence of belief in our own power, supported by groups of like minded others. Since our son died, nearly 6 years ago we’ve analysed what went wrong for him and put in place systems locally to offer the support he needed and didn’t get. We have gone head-on with the NHS to keep a welcoming day centre open, built up 50 or so regular attendees there who have become like one huge supportive able extended family, whilst offering the chance to learn new skills. At the same time we are building one of our own in another county. This idea needs to spread, just like the best medicine there which is the laughter that spreads infectiously round the rooms, due to the genuine care we all feel for each other.
No time for sitting on our hands and feeling sad, folks or touting for sympathy. Olly, our son wanted ACTION to help others and that’s what he’s getting. Books have been written and published too. Art works created. Anorexic people are now cooking meals from produce they’ve grown there and serving and eating them with us all. Psychiatry is long discarded because it’s an irrelevance.
But, and here’s the point, when we try to help people get back into work in society, I’m afraid the wretched ‘original diagnosis’ still has to go on application forms if honesty must prevail, and THIS is the problem I want solved,
which brings us back to square one where we came in with DH’s first post on 25th July 2018. The medical Notes and the lifelong diagnosis. Perhaps a magic eraser is the answer. Or more feasibly, a Medical Notes Abduction SAS team/hacker brigade. Surely between us we could manage to set one up. Quicker than 9 years’ long negotiations, because these people don’t have time, strength or desire for all of that, excellent as the result has proved to be for Krista. They are not adversarial, they just want to live a normal life, as do we all.
And finally, Krista, on a personal note, 67 is not old, btw, there are probably still 20 useful years ahead to be enjoyed rebelliously and in which to continue to make a difference. Go for it.
susanne says
Hello Heather – I always read your comments with sadness and admiration. I do agree that few people will be able to put the experience of bloggers and others into practice – they won’t have come across them for a start but the more they are out there the more we can only hope they will help. I don’t think it possible to forgive and forget when so much harm is done – those involved with caring for others can end up in the system themselves because of the shock and stress of what they end up dealing with. .It’s a mess and definitely an issue of human rights. I am wondering if the exodus of GPs might have a positive outcome If Nurse Practioners take over more as is happening some places it might start to ch\ange the power dynamic and other parts of the system? – if they don’t just carry on the same games. Human Rights are top of the agenda with regard to institutional abuse – we may have lessons to learn from the activists who have worked their guts out against all the defences put up against them by the church, with the help of course of governments and their agencies such as social and mental health services.
As it is funding is going into more projects to support doctors with mental health problems – most of the 3 in 5 do not admit to any health service that they are unwell – leaving those who consult them at risk in different ways, be it unacceptable behaviour or wrong treatment. (wonder why theyuse 2 in 5 not 1 in 4 as is used for ‘the community’ when the number of mentally ill is the same for both ?)
According to a publication by Clare Gerada Wessely; Gwen Adshead and Martin Black high numbers of medics could be diagnosed with Personality Disorder (no wonder they avoid the NHS) ‘Disruptive and Distressed Doctors’
Gwen described herself as a distressed doctor as a result of a complaint against her and has made part of a career promoting the diagnosis of personality disorder .
Alex Wessley and Clare Gerada -Wessley wrote a joint article under the Hurley logo. Clare used only the name of Gerada -promoting the Practitioner Health Programme Is Alex one of the Wessley clan ? If so surely a declaration should have been made as she described herself only as an independant researcher. more slip sliding . Many doctors resent these projects especially when this one cost £1500 .
At one time Gwen ,around the time she was working at Broadmoor, ran a private clinic with a colleague and was funded to give compulsory training to failing doctors. It was considered humiliating. That project collapsed.
Another project exclusively for doctors is run by Gwen Adshead who promotes mindfulness courses at a swanky venue with Shaun Bhattacherjee, known as Lord of the Sages.
So there are also groups such as wounded healers and privately run support groups and Balint Groups and goodness knows what else doctors seem to need to do the job these days. Are the wrong people being admitted to medical schools by the wrong people when so many complaints are about bad behviour to say the least – too much nepotism still/?
The conclusion of the group above which claims that there is a higher prevalence of personality disorder in medics than in the community was:-
‘We will need psychological interventions for doctors that address negative personality pathology. Who will pay.? It is probably too late’.
I would prefer them to find another job .
It would also be a good idea if those who have been promoting these unsuccessful self interested schemes would be replaced – they have done neither doctors, apart from a small few, or the people who use the NHS and pay for it much good .
–
Krista Hartmann says
Heather, In a Comment following #3, I proposed some approaches that would address the ‘Lifelong’ defining language issues that cripple many clients; psychologically & administratively. It might be a start for some looking for tools based on what I needed the most. My goal is that others would never waste 9 years getting out. Perhaps someone will see some merit.
I am disappointed that I so poorly transmitted “I’m 67 and life is short” causing anyone to think I feel ‘old’. I’m aware of the preciousness of time in a manner I didn’t when younger; a normal part of aging. I had made a timeline leap from 53 to 65 years with a lost decade in the middle there with brain damage. I’m busy healing, catching up & laughing alot.
You sound very effective in your efforts to help others. I think your family’s legacy is wonderful. I drew a conclusion that doesn’t accurately reflect your posture, apparently. I was concerned.
Good luck to you & yours.