Mental Illness Awareness Week Is Nothing to Celebrate -- In Fact, It Doesn't Even Exist

This first full week in October is being celebrated as Mental Illness Awareness Week (MIAW). The holiday doesn’t even exist. More about that later.

But in celebration of this mythical event, well meaning mental health advocates are busy hosting events to reduce the “stigma” of mental illness.

Stop. Stop right now. Hold it. Here’s another reality check: There is no ‘stigma’ to having a mental illness. There is ‘discrimination’, but that’s another story.

Serious mental illnesses are real biologically based disorders that are no ones fault. Serious mental illness is not, “a mark of shame or discredit”, or “a mark or token of infamy or disgrace”.  There’s no stigma to being mentally ill the same way there is no stigma to being “black”, “gay”, “short”, ”tall”, “lefty”, “righty”, inny, or outy.  There is discrimination. As J. Rock Johnson, a former board member of a major mental health organization once said, “the most stigmatizing thing we do is talk about stigma”

The efforts to reduce this non-existant stigma are harmful because they are designed to work by diverting attention away from those who need our help the most: the most seriously mentally ill.

The anti-stigma campaigns are premised on the belief that the key to reducing ‘stigma’ is to convince the public that “the mentally ill are just like you and me” and  “with proper supports can become productive members of society”.

Those two facts are true, if you’re talking about the high functioning “worried-well”--the 25% of Americans who have a “diagnosable mental disorder”. But, hey, who doesn’t?

But what about the others? The effect of Mental Illness Awareness Week is to divert attention away from the 3%-5% of Americans who are the most seriously mentally ill--like those suffering from schizophrenia or treatment-resistant bipolar disorder, the very mentally ill people who are not “like you and me” and need our help the most.

MIAW intentionally diverts attention from those who as a result of their untreated illness are homeless psychotic, eating out of garbage cans, sleeping in cardboard homes, and living with festering wounds under layer after layer of filthy clothes.  Done that lately?

The anti ‘stigma’ campaigns intentionally divert our attention from the mentally ill who are in jail or due to lack of treatment are likely to become violent. The advocates attack the media for reporting on violence, and go through mathematical contortions to “prove” “the mentally ill are just like you and me”.

Trying to gain sympathy for mental illness, by only displaying the highest functioning individuals, is like trying to end hunger by showing the well-fed.

This effort to divert attention away from the seriously ill and towards the worried-well may be well intentioned, but it is definitely harmful. It leads to the term “mental illness’ losing all its meaning. And with no meaning, federal and state agencies can dilute their efforts and spend money on any project they want.

Rather than provide services that would make people with mental illness more welcome in the community, the Substance Abuse and Mental Health Services Agency (SAMHSA) funds ‘anti-stigma’ efforts to change the people in the community. Say what?

The National Institute of Mental Health (NIMH) which has primary responsibility for funding research on serious mental illnesses virtually ignores it.  According to a report by Dr. Sidney Wolfe, Director Public Citizen Health Research Group and others:

• In 2002, (only) 28.5 percent of NIMH awards went to research on serious mental illnesses. 
• Only 5.8 percent of all NIMH awards went to clinically relevant research on serious mental illnesses. "Clinically relevant" means reasonably likely to improve the treatment and quality of life for individuals presently affected.
• Between 1997 and 2002, the proportion of NIMH research awards for all aspects of serious mental illnesses decreased by 11 percent (from 32.1 to 28.5 percent). For clinically relevant aspects of serious mental illnesses, it decreased by 22 percent (from 7.4 to 5.8 percent).

Everything is fair game for funding if it can be even tangentially connected to mental anything.  Funding goes to the “worried-well” leaving the seriously ill to fend for themselves. The government can even divert their money to funding, say, PSAs that say, “the mentally ill are just like you and me”.

Diverting attention from the severely mentally ill also diverts the public from addressing the policy initiatives that can help the seriously ill: like ending health care discrimination and government discrimination against the seriously mentally ill, saving state hospitals, and finding a cure. It leads to reports by the Surgeon General and President’s Commission on mental “health” that virtually ignore the mentally “ill”.

Dr. E. Fuller Torrey of the Treatment Advocacy Center, and the nations leading mental illness researcher and advocate has a solution. He suggests that any government mental health program that doesn’t use at least 50% of the money for the seriously mentally ill should lose it’s funding. My own solution is a federal definition of “serious mental illness” that would force federal programs purporting to serve the seriously mentally ill population to serve that population instead of serving people “just like you and me”.

How bad is it? Mental Illness Awareness Week does not even officially exist anymore. Congress first declared it in 1989 at the strong urging of the National Alliance on Mental Illness, which still celebrates it.  (Who needs Congress anyway?) It was re-enacted in1990, 1991, 1992 and 1993. But since then, no one in Congress has had enough interest in the seriously mentally ill to keep it going. 

However even though Mental Illness Awareness Week bit the official dust, stigma groupies will be happy to know Mental Health Awareness Month (May) is coming on strong.

So here’s an idea. This week, while everyone else is celebrating the non-existent MIAW by working to divert your attention to the “worried-well”, let’s think what we can do for those so seriously ill, so imprisoned, impoverished and punished by their psychosis, they are not at all “like you and me”--the 150,000 mentally who are homeless, the 231,000 who are incarcerated due to acting out when untreated, the 5,000 who took their lives this past year, the 70,000 in state psychiatric hospitals, and the 28%  who get food from garbage cans.

They don’t deserve to be ignored. Least of all by those who say they want to help.

Follow DJ Jaffe on Twitter: www.twitter.com/TheRealMrMe

Comments

[fireflame]

I do agree with your idea on showing the people who are doing well and not focusing on the ones who really need the attention unacceptable. I do however believe there is stigma. Just the uddering of SCHIZOPHRENIA conjurs up alot of misinformation to the ignorant.

[Jae Parker]

Thanks DJ Jaffe for this insightful work. Really, great read. Quite frankly, I feel that the American public is scared of those 5% you were talking about and don't really feel that they have a place in our oh so perfect society. The mental health system is not designed for those people, and that is why they suffer so much as a result, not to mention outcast from society. Having schizophrenia myself, I can tell you that I have face my fair share of disappointment with the American public from all walks, creeds, races you name it. It would seem as if these 5% of people have been left to wither away and perish but just for the sake of reality here are the numbers that are being left to pasture: 307,606,591 united states citizens. 5% or 15,380,329, thats right 15 million people are basically getting the finger from this country and its mental health advocates. Its even worse when its happening because of ignorance or fear. Please, Americans, get over yourselves!!

[KevinOwen]

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[lhwrites]

I have been working in a Residential system, fighting community stigma for years. It is fear and ignorance that motivates stigma. 100% of the mentally ill ARE just like everyone else---they deserve to be treated like human beings, to live in neighborhoods near their friends and family, to have access to jobs when they can work, and to get their treatment in their own communities. The 3-5% with the most debilitating illness are not the danger they are perceived to be by an ignorant public. Almost every individual incident reported by the media of someone challenged by mental illness that perpetrates a violent act can be traced to them being out of treatment at the time of the incident. Studies show that the mentally ill are no more violent than average, that their housing does not negatively affect property values and that their housing is some of our safest. Some anti-stigma efforts are aimed at making it more acceptable to seek out diagnosis and treatment. Why? If even the least affected of us are ashamed to get treatment, imagine how it must feel when serious mental illness begins to manifest? Mental Health Events and Anti-Stigma Campaigns can help build the public perception that Mental Illness is a biologically based chronic and treatable condition, much like heart disease and diabetes. People need to understand not just that the mentally ill are like them---but that they are their families, friends, colleagues and neighbors.

[DJ Jaffe - Huffpost Blogger]

Thank you for your comments and work in the residential system. I believe what you are fighting is discrimination and prejudice, not stigma. You are 100% right that incidents of violence by people with serious mental illness is almost always associated with being out of treatment at the time. That is why policies like those advocated by the Treatment Advocacy Center, must be adopted.

[JRenaud]

Jaffe is one of the most intriguing commentators on mental health issues. He illuminates here the separation of person who have a prospect of getting well, which are perhaps the majority of persons with mental illness, from those who have no prospect - or really opportunity - to get well.

But using the term 'discrimination' we move into the realm of legal action - far more interesting than 'stigma' and public relations.

[pmoessner]

Having been homeless, in jail, and several times psychotic myself I would say those with a mental illness are "just like you and me." We have the same physical and emotional needs everyone else has. Our psychosis just makes it difficult to communicate that. We're not aliens. While better treatments need to be come up with you make it sound so hopeless. I have relapsed but right now I am successfully in a PhD program in computer science. Am I a member of the "worried well"? I need medication to stay stable.

[iblogleft]

As someone who has lost everything (material) to Bi-polar disorder over the last 8 years, I want to thank you for your efforts.

[felts]

It is sad how the prejudice/­stigma/stu­pidity tries to minimize the suffering of those who suffer psychosis with schizophrenia or bipolar disorder. Recently a popular website suggested that psychosis is really a "learning experience". Those who posted seemed to think psychosis is just an alternate way of thinking. They were utterly clueless to how distressing psychosis is and how often it drives its victims to suicide. Not stigma, but stupidity.

[DJ Jaffe - Huffpost Blogger]

I am not sure which "popular website" you are referring to, but I would not be surprised if the organization behind it was receiving government funding. Thank you for your comment.

[felts]

I am 100% certain that the site (Furious Seasons) doesn't receive any government money. The site's creator is often asking for donations. The creator and the usual group of commentors do not trust psychiatry to the point that the label of anti-psychiatry would stick to them.

[laserword]

Thank you very much for your efforts in creating awareness about mental illness and the devastating effects on people. I had strugled with depression and possibly with bipolar disorders for the last ten years. I decided to fight back these disorders on my own due to the lack of effective treatments offered by the parties involved in mental illnes, such as the mental heatlh care system, the mental health practitioners, and even the patient themselves, as the last recipients of these pesky disorders. I decided to embark on a crusade to let people know that there are options regarding treatments, and that at the end of the day, when everything else fails, RESILIENCE, is what keep us alive. I wrote a book on my experience. Thank you. www.tangledsynapses.com

[Skylarstar]

This topic needs much more attention. However, I disagree strongly with a number of points the author makes in this article. There is a powerful stigma to mental illness -- anyone who suffers from mental illness or knows someone who does is all too aware of it. Another disagreement is that mental illness is primarily biological. Numerous studies have shown that the majority of those diagnosed with a mental illness have a history of childhood abuse (often sexual abuse) or adult trauma.

By refusing to look at the history of abuse we avoid the harsh reality of the prevelance of childhood trauma -- often horrific. I highly recommend Alice Miller's ground breaking books particularly "The Drama of the Gifted Child."

We're living in the dark ages where mental illness is concerned. Pop a pill and it will cure all. Pleez....

[MerrieWay]

A friend's daughter was diagnosed with psychosis. Other severe physical symptoms led her to the hospital and underlying tests were given. It was discovered that she had a rare form of diabetes that was causing psychosis. Typically the seriously mentally afflicted aren't tested to determine underlying conditions. The corrupt Pharma's and insurance companies have dictated drugs and treatment. Shame on them! Shame on us, for not standing up for ourselves and the most vulnerable.

Call it what you want, Doc. But, if you walk into a grocery store with someone who is struggling with psychosis, the unpredictable blurting out or erratic behavior frightens people. That becomes an instant stigma, or whatever, to ostracize and to keep out of harm’s way.

NAMI has a viable program to help family members and friends to understand what their loved plight.. The problem is NAMI operates from an Mental illness, rather than from a Mental HEALTH model. There is a distinction in the approach to treatment.
Young people under the age of 21 receiving high dosages of psychotropic’s can backfire in the efficacy of administered drugs. They are more likely to cold-turkey the meds, which is dangerous, withdrawal exasperates symptoms. The Phama's outright lie, claiming that psyche drugs not addictive.
We need to determine the nitty-gritty failure of the mental health system and rectify abandoning the most needy. Thank you for bringing light on the subject.
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[DJ Jaffe - Huffpost Blogger]

I use to edit a newsletter in NYC in the 1990s and included a lengthy article about other diagnosis that may mimic mental health. It was written by Dr. Ron Diamond and can still be found online at http://www.schizophrenia.com/newsletter/996/996news10.htm#diamond

It does mention the rare form of diabetes you referred to. Thank you for your comment.
dj jaffe Twitter TheRealMrMe

[Nikkiefied]

This really is something that needs to be talked about more. It's such an important issue, but it can't be properly addressed until more people are aware of how common mental illness is.

http://speakonit.com/index.php

[OtayPanky]

I appreciate the spirit and intention of your blog, here. There is disproportionate attention given in our society to the psychic aches and pains of of the worried well - on talk shows, on HuffPo, and in all sorts of media. It's all part and parcel of the narcissism that afflicts our generation.

That said, I have to disagree with your statement that there is no stigma for those who are mentally ill. There is, in fact, a tremendous amount of stigma as a societal attitude, and it is the stigmatization that leads, inevitably, to discrimination.

Other than that, though, I think what you wrote is serious, brave and (sadly) true. I hope to see more blogs of this calibre in the living section in the future. I get pretty weary of the endless parade of vacuity about "10 tips for this and that" from life coaches, and how some spiritual or medical fad of the moment will save the planet.

[DJ Jaffe - Huffpost Blogger]

Thanks for your comments. The "stigma as a societal attitude" and "stigmatization" that you refer to is, in my opinion, better described as 'prejudice'. I agree that there is discrimination and prejudice against the mentally ill. I do not however believe there is any "stigma". When I started talking about this 10 or so years ago, it was heresy. I am happy to note that even the most diehard 'stigma' folks are now talking about 'stigma and discrimination' or abandoned 'stigma' altogether. I do think it would be neat to add in 'prejudice'. Thanks.

[OtayPanky]

I think I get what you're saying, in re the symantics of the word STIGMA.

The word implies that there is actually something there worthy of stigmatizing...and what you're trying to say is that this just isn't true. Just like it is wrong to stigmatize Jews (as was done for 2000 years), or Blacks (as was done for centuries here in America), or Gays (as is STILL being done right now), stigmatizing those who are mentally ill is just plain wrong.

Keep up the good work.

[Louesa]

Well, there's a problem with this argument. We spend more on researching cancer than we do the common cold, even though colds affect more people. The sequelae of cancer are far more devastating than the sniffles or a few days off work. Similarly, the impact of severe mental illnesses are life devastating for the patient, his/her family, and the society. Wouldn't it make more sense to focus on where you'd get the biggest bang for the buck?

[DJ Jaffe - Huffpost Blogger]

The point you raise is fascinating: should money be spent on the most people, on those who need it the most, or on those where it can do the most good? I.e, how to we ration limited dollars. As far as I know Oregon is the only state that has grappled with that. I personally believe mental health dollars should be spent on the most seriously ill (and coincidentally: those who present the highest cost to society when untreated). I believe that is an obligation society has, to help those who can't help themselves. A debate on other ways to allocate money (ex. don't spend on the homeless psychotic, cause they are less likely to become 'productive members of society' and instead fend it on the least severely ill) is one that is worth having, but I know where I stand (fully understanding others may feel different). Thanks for comment.

[dnaromney]

A full "28.5 percent of NIMH awards went to research on serious mental illnesses" that benefit only "3%-5% of Americans who are the most seriously mentally ill," while the other 71.5% of funding presumably goes to benefit the "the 25% of Americans who have a 'diagnosable mental disorder.'" That comes out to a ratio of 5.7:1 (funding:affected) for the seriously mentally ill vs. a ratio of 2.86:1 (funding:affected) for those with less serious mental disorders. Perhaps there is some debate to be had about the precise allocation but this allocation hardly seems like the reckless betrayal portrayed here.

[DJ Jaffe - Huffpost Blogger]

Thanks for your comment, but I respectfully don't agree. I personally believe, and argue here, that since we have limited dollars they should go to those who need it most, not be distributed to anyone, no matter how high-functioning, and non-disabled. Thanks again. (PS:I have trouble following your math, but I think, possibly erroneously, that it is faulty in that your "n" is total population. Since the "n" should be total population with a mental illness, I think your numbers would comeout different.)

[dnaromney]

I think that much can be said for your main assertion (as I understand it), that limited resources should be used with a goal of bettering the lives of those who stand in greatest need. Another might argue that resources should be distributed equally, and another that they should be used for the greatest good. I think there are good arguments for each approach and that any discussion on the matter will have to take each seriously. I never meant to take a stand on this issue.

What I did want to point out is that the way you present this issue makes it seem as though nothing is being done for the seriously mentally ill. (As a side note, I don't think that the labels "serious" and "high-functioning" are adequate to describe the spectrum of mental disorders, a problem you might want to address.) I simply used the numbers provided in your article to show that if you divide the percentage of the NIMH budget devoted to the "seriously mentally ill" by the percentage of Americans thus affected and then do the same for the remainder of Americans with a mental disorder, it is clear that resources are preferentially allocated to the seriously mentally ill already (5.7 vs. 2.86). If, as you suggest, only the population with a mental illness is included the numbers come out as follows: 1.68:1 for the seriously mentally ill and 0.86:1 for those with less serious illness.
(CONTINUED)

[dnaromney]

(CONTINUED)

Either way, twice as much is spent on each seriously mentally ill individual as is spent on those with other disorders. It is important to realize that "less serious mental illness" encompasses a wide range of disorders, many of which have a severe impact on quality of life and earning potential (OCD, clinical depression, bipolar disorder, etc). If, as you suggest, 50% of the NIMH budget was devoted to the "seriously mentally ill, the ratio of funding would be as follows: 2.94:1 for the seriously mentally ill and 0.60:1 for all others, or 5 times the amount spent for each individual with serious mental illness as for each with another disorder.

I think you might make a compelling argument that even more should be done to help those with disabling illness, but I do not buy the argument that they are forsaken under our current system. In most cases, effective treatment for even the most serious illnesses exists; the problem is with distribution rather than research.

[freelyb]

These figures are particularly condemning in light of the fact that the culture itself has a huge hand in exacerbating mental illness to begin with.