Friday, January 29, 2010

Rerun - Clinicians: The Worst Purveyors of Stigma

Yesterday, in a blog piece on paradigms and psychiatry, I commented that the profession's major assumptions were under serious attack. In response, one of my favorite bloggers Willa Goodfellow posted two perceptive comments which led me to respond that psychiatry is operating under the fatally-flawed paradigm that they have to be the big know-it-alls. Smart patients with proven success are treated as anomalies to be ignored.

I could have written a lot more. Then it occurred to me - I already have. Following is a piece I published 12 months ago. Please read it in the context of yesterday's piece ...

In a previous blog, I mentioned an email interview I recently completed with I Am Bipolar.

"Have you ever experienced negativity or stigma from people who have become aware of your condition?" Michael, who runs the site, asked.

Hmm. Interesting question.

"Ironically," I replied, the worst stigma came "from clinicians and fellow patients, the very people who are also my best supporters."

Clinicians have long accepted me as a journalist. In 2007, in fact, they even honored me with a major international award. But I am not one of them and never will be. Last year, I was invited to give a grand rounds lecture at a psychiatric facility in Princeton. I accepted with some trepidation. It is not my place as a journalist to tell others how to do their jobs.

I showed up with a talk on medications compliance. I'm sure the 50 or 60 clinicians in the audience expected me to blame patients for being too stupid to work the child-proof cap to their meds bottles and such, and indeed I did touch on that. But I also blasted the pharmaceutical industry for aggressively marketing meds that often made us worse rather than better, as well as clinicians who should know better, at the expense of the individuals they are supposed to be serving.

I wasn't just some antipsychiatrist spouting off. My PowerPoint contained reams of citations from the leading psychiatric authorities, including conferences I had attended and first-rank journal articles and editorials. But it was also my duty to wrap it all up and tie it in a bow. With reference to the fact that over the long-term some 70 to 80 percent of patients either drop out of clinical trials or are in some degree noncompliant on antidepressants, mood stabilizers, and antipsychotics, I pointed out the obvious:

"Just sending a patient out the door with a prescription is not treatment."

I wasn't all negative. I mentioned how compliance rates could be improved upon by employing psychoeducation, support groups, various talking therapies, books, websites, and so on. But this did involve the need to build trust with patients and spending time with them, plus being proactive in referring them to other services and sources of information. Again, just sending a patient out the door ...

As soon as my lips stopped moving, the room emptied faster than a high school Latin class at the three o'clock bell. No one approached me for a polite handshake or to follow up on any points I made, or to request more information. Only one person bought my book.

As I said, it is not my place to tell others how to do their job, particularly when nothing I said could be interpreted as a pat on the back, and my discomfort clearly showed in my talk. But even taking all of that into account, I was truly amazed by the magnitude of this group snub. Had I a PhD or an MD or an MSW to my name, I would have been treated with far more civility. But I happened to be a journalist who was also speaking as a patient.

The biggest complaint I get from my readers, I said in my talk, doctors who don't listen. Boy, did they prove me right.

Future blog: Stigma from patients. Stay tuned ...


Loretta said...

John - You make many good points. I'm a licensed independent social worker and have been working in mental health for 13 years. I also have bipolar II disorder, and have a number of family members with mood disorders.

I doubt those psychiatrists at grand rounds would have given you any more time or attention no matter WHAT credentials came after your name. Most psychiatrists have been trained to do medication management in 15-minute sessions. Period. You want talk? Go find a social worker or psychologist who does talk therapy. Psychiatrists rarely go beyond brief review of symptoms and med compliance (I'm using their word; I make a practice in my practice NEVER to use the word compliance). They do not do talk therapy or case management or psychoeducation or recommend books. Actually, I have had experiences, personally and professionally, with psychiatrists who do take the extra time to get to know their patients and offer more than meds. But they are the exception.

So I agree with you, doctors don't listen. But not because you don't have a string of credentials after your name. They aren't trained or compensated to listen. I'm not excusing them; I'm suggesting that the whole mental health system needs an overhaul.

Have you ever heard a psychiatrist ask a patient, "What are your goals for yourself and how can I help you attain them?"

Alright, stop laughing now.

John McManamy said...

Hey, Loretta. I hear you loud and clear. And, yup, I'm still laughing at your punch line. :)

Pam said...

Excellent post.. well put... as are Loretta's comments... thank you

herb said...

Hi John,

What a wonderful and thoughtful subject you’ve addressed.

After more than four decades in support of my spouse’s wellness I’ll state we’ve been fortunate to have most of her attending physicians knowledgeable, caring, attentive and thoughtful in working toward our goals although not all.

As a fellow blogger of well more than a decade I personally find the abuses and intolerance of fellow patients (bloggers) heaped upon one another and upon me even more derisive, insensitive and disturbing.

Through these years I listened to and read ideas and narratives of patients suggesting treatments and/or achieving varying degrees of wellness as well as their narratives of serious and detrimental side-effects with much interest, curiosity and without any disdain or any need to give any advice while sharing my experiences, research and knowledge from the perspective of a support person and proactive mental health advocate to my spouse.

On the other hand I find the efforts and position of many who participate on these mental health forums to be sadly intolerant of differences and far less helpful and caring than those offered by the medical professionals we‘ve enlisted.

There is much education and tolerance of one another still needed to help us all help one another.


joicie said...

I wonder, does our Own labeling give ourselves stigma? I am Joyce. I am not my DX. I think this is real important never to put yourself, or myself, in a box unconsiously by using a word that labels me, perhaps less than. I'm a warm, funny, happy person. Yes Joyce does happen to struggle with her moods and is very sensitive. Actually I am rather fragile. But I should not present myself that way to others. I work on myself and am becoming stronger. I'm proud of me. Seriously, Joicie

John McManamy said...

Hi, Joyce. We as patients fall into the label trap. On one hand we do need a precise diagnosis. My realization of my illness was the first step on my road to recovery. But too many of us fall into the trap of feeling limited by our diagnosis. We over-identify with all the horrors of our respective ills and ignore our strengths and gifts.

Also, in my experience, my fellow bipolars are extremely judgmental re other bipolars. I have experienced this numerous times. If I come across as happy and exuberant then I'm automatically manic or hypomanic and must be off my meds.

And if I object to this, then it must be because I have no insight into my illness. I get this bullshit from people who should know better. It is extremely stigmatizing. It is both a self-stigma and a group stigma. Yes, we all need to remind our friends of potential mood swings. But we also need to get out of the bullshit mindset that we are supposed to be as boring and stupid and unimaginative as the "normal" people who would clip our wings.

Anonymous said...

"Also, in my experience, my fellow bipolars are extremely judgmental re other bipolars. I have experienced this numerous times. If I come across as happy and exuberant then I'm automatically manic or hypomanic and must be off my meds." ... John McManamy

You do understand, right, that when diagnosed with Bipolar.. and taking plethora of meds... you aren't entitled to being or feeling "normal" emotions? So, to be happy or excited would automatically mean that something has gone wrong and you need to up the meds.

It's because, when we are diagnosed Bipolar we are then Bipolar and no longer recognized as human beings. We are brainwashed by mental professionals to fear any normal emotion reaction or responses.

If someone close to us passes, we feel grief, we must automatically up all our meds... we are not allowed to feel grief. If we are excited over something wonderful happening in our lives... we must immediately go and kill it with an increase in our mood stabilizers and anti-psychotics because we aren't allowed to feel "excitement".

We are to remain nulled. Granted, prior to diagnose we all lived in a random crack shot hell but we felt emotion and had random normal responses and reactions. The medications were and are supposed to "even" out the random crack shots... not just lay us out and flat line any or all emotion/mood.

By all means John.. if ya got something to be happy and exuberant over.. please God, John enjoy it. You are a big boy and a grown man in big boy britches now and you'll know the little signs of things going off kilter... you ought to by now.

Life is just way too short to always be drugged out of humanity.

John McManamy said...

Hi, Anonymous. Very much in agreement. Re meds: John Gartner gave me the analogy of the pitcher in Bull Durham who threw the 100 MPH fastball but always beaned the mascot. You want to be slowed down to say 95 MPH and get the ball over the plate. So I'm on a very light dose mood stabilizer, just enough to slow my brain down just a little bit (plus I manage my sleep, plus mindfulness, etc etc). Last thing I want is my fastball slowed down to 50 MPH, which is often the way our psychiatrists would like to see us.

So it's finding the sweet spot between speed and control. If you can control your speed with mindfulness, sleep management etc then that is the way to go. If you need a full meds dose that doesn't turn you into a zombie that's fine too.

It does take time to find the sweet spot. You know you've got it wrong if your friends start looking at you real funny. I'm fine with coming across as a bit eccentric and over-exuberant, but I also weigh that in with whether these same people take me seriously, as well.