Tuesday, June 06, 2017

NAMI: or It's All in the Words....

As I mentioned earlier, I've written a post over on PsychologyToday about how I believe the upcoming NAMI election and the question of whether NAMI will cover a 'big tent' or a 'small tent' -- a focus on severe mental illness versus all mental illness-- is about forced psychiatric care.

One the candidates for office, DJ Jaffe, responded to my PsychologyToday post and said it's wrong, and I should change it. It's an opinion, not a statement of fact, so I'm hanging out with my first amendment right to free speech.  Mr. Jaffe included his whole campaign speech and you're welcome to check it out.  His contention is that in broadening the tent to include all, the SMI  (serious mental illness) agenda has been pushed out into the rain, not included, and goes point-by-point through why this is so.  I'm moving the discussion here because it's an easier venue for me to negotiate (PsychologyToday has a more difficult template and requires editorial approval).

Just some thoughts: 
Mr. Jaffe writes:
For example, in almost all their communications NAMI National has replaced the phrase “mental illness” with the phrase “mental health conditions” as if mental illness were a dirty phrase not to be uttered in polite company. 

My feeling is that I'm a psychiatrist and I treat psychiatric conditions, just as a dermatologist treats dermatologist conditions, or one might see a nephrologist with a kidney condition.  Mental health conditions, mental illness, psychiatric disorder.  The truth is that we don't really have a definition for this: DSM-V has nearly 300 diagnosis, it's easy to get into a box if you want.  The SMI folks tend to focus on diagnosis as though it's absolute and accurate and each one has a uniform prognosis, specifically schizophrenia, bipolar disorder, and severe depression.  Diagnosis can be wrong, it can have a variety of prognoses, and other illnesses-- such as severe obsessive compulsive disorder, severe anxiety, and eating disorders --can be terribly disabling and can cause incredible psychic torment.  "Minor" problems such as adjustment disorder, can result in suicide.  My pet peeve is with calling psychiatric disorders "behavioral disorders."  Many of the people I treat are lovely human beings who behave just fine, thank you.

Mr. Jaffe says that anosognosia is far more important than access to services in keeping people from getting care.  Clearly, Mr. Jaffe has not tried to get care using his public insurance at a clinic in Baltimore. 

Finally, in terms of words, I'm told that it's objectionable to those who advocate for the SMI population to use the words Hope and Recovery.  Who could be against Hope?  Who wants to go see a psychiatrist to be told there is no hope, that they will never get better?   Of course people get better, why else would they come?  All better?  What does that mean?  Most people experience a decrease in symptoms.  Many find that therapy helps them to understand their issues and communicate in a more functional manner, which makes their lives go more smoothly.  (Oh, but much of SMI advocacy is about medications with little thought to therapy).  Many people come in looking horribly sick, tormented and suffering,  and then do get better:  they return to work or to school or to having meaningful relationships.  It often takes time; it's unfair to tell people that they won't get better and have a poor prognosis because we just don't know.    SMI often gets to be about forced medications, and distress about homelessness and incarceration.  If you want people to be housed, might I suggest providing them with housing?

And finally, I am perplexed that NAMI objects to the term 'suffering.'  It's an important word for the sake of helping to convey your psychic pain to another human being, and I often ask people if they are suffering or tormented, and those who look quite well, often say yes.

Ah the words.  So much power to injure, but these particular words don't have much power to heal. 


Mental Illness Policy Org said...

This may intererst your readers https://mentalillnesspolicy.org/open-letter-to-nami-about-smi.html

Joel Hassman, MD said...

Fairly fascinating, and equally pathetic, what people in this country turn to these days for leadership.

But, it comes down to the three basic terms that set policy for people: popular easy and convenient.

By the way, if you want to see how pathetic things really are, why don't you visit one of our state hospitals and see how forensic psychiatry has twisted mental health care into such a black and white definition.

And how public defenders are trying to dump honest mental health patients out into the streets so we can fill more beds for Correctional patients to come in, so the courts will be satisfied that beds are being filled and then quickly emptied and thus the Maryland lawsuit can be dismissed.

You know, the one that is claiming that alleged mental health patients are suffering in correctional facilities and not getting the care they need, when in fact we're just being forced to take personality disordered losers who we can't really help at the end of the day

It's sad, pathetic, and ugly!!!

Have a nice weekend

Joel Hassman, MD

Sunny.Sunshine said...

I support funding for all those who want mental health services. I do not support forced treatment.

I also support providing safe housing (without strings attached) and food for the homeless population, some of whom would also be in the group that want mental health services and others, not.

I have a biased view of NAMI, but I will share it. In my opinion, NAMI lost its way long before the current election. They lost their way when they accepted support from big pharmaceutical firms. Twelve years ago, when I ended three weeks of in-patient psychiatric care, and followed it with a daycare program, our "class" was met frequently, at lunch, by a NAMI representative who was looking for local speakers who would give their first-person account of recovery from mental illness. I agreed to consider speaking.

When I called the NAMI rep about six months later, I was told that there is a strict structure to the presentation of each presentation:

(1) I was mentally ill
(2) I took pharmaceuticals to treat this condition
(3) I continue to take the medications as prescribed, and due to the medications, now I am "fine".

I told the rep that before I ended up in the hospital, I was "fine", that I went off the forced medications post-hospitalization with the help of my psychiatrist, and I am back to being "fine" now that I am off.

I asked if I could present my story, as I described.
The answer to that was "NO", we want the story of how pharmaceuticals "cured" you.

If my regional representative to NAMI represents the perspective of Nami as a whole, they went off the tracks a long time ago. In my opinion, NAMI is an organization of private citizens who have been "recruited" to support the aims of Big Pharma, to sell their psych meds.

Twelve years later, I do not regret going off psych meds. I feel fine. I appear to the outside world as normal as anyone else and feel totally normal within. I am not suffering or in psychic pain.

Anonymous said...

I get that there are lots of big picture and policy issues and such involved, but at least am amazed that the person writing this is a psychiatrist. Says a person who embraces his bipolar with psychotic features "tent." And doing so has saved my life, even if understand there are so many other issues to deal with. Just not sure why helping all of us has to be a war.

tracy said...

Joel Hassman, MD "....Personality Disordered Losers.... Really? Really?

Anonymous said...

Even in the UK anosognosia is not the major difficulty in obtaining care. There are long waiting lists, very little continuity and even less ongoing care. If you are standing on a train platform the police might pick you up and you might get sectioned into an acute care ward for a few days. If you are experiencing suicidal thoughts and impulses you will be lucky if the crisis team visit you at home once or twice. If you have a chronic mental illness then a care co-ordinator might drop a note through your letterbox occasionally. Other than that keep taking the pills and you might see a psychiatrist once a year - if the appointment isn't cancelled.