Still invisible after years of awareness

Compare the situation years ago with the one we have today and the success of mental health advocacy becomes apparent. Once upon a time, mental illness meant that your potential, choices, rights, your presence in the community, essentially your life as you knew it came to an end. Few people openly admitted to having a mental illness or having an afflicted family member. Mental patients were locked away in institutions with subhuman living conditions where abuse was rampant. Treatment beyond housing and damage control was virtually nonexistent.

Today, we have a wealth of research, therapies, and drugs to treat most mental illnesses and more people than ever have access to mental health care. More people than ever, without an ounce of shame, discuss experiencing and recovering from anxiety, depression, addiction, and a laundry list of other conditions. These are ordinary, successful people from all walks of life, far from the common image of the lunatic from Bedlam.

Stigma, lack of education and limited access still plague mental patients and their loved ones. The fight is far from over, but the mental health advocates deserve a pat on the back for the job that they’ve done so far.

Regrettably, those advances came at a cost.

Focusing on more minor illnesses such as ADHD, depression, and anxiety and highlighting the normacy of the patients has done a great service in the sense that more people are willing to seek help. They no longer fear that if they admit to their shameful secret that their lives will be over. They no longer feel at fault for the so-called weakness of having a mental disease. I say that the aforementioned conditions are more minor not because they cannot be severe or debilitating, but because the brunt of the impact is isolated to certain facets of your well-being. ADHD affects attention, depression affects mood, and so on. Brain injuries, schizophrenia, and developmental disorders are considered more serious conditions because they cause impairment in every element of functioning, including that element of self-awareness that tells you that something is majorly wrong.

That’s where the problem lies.

While other conditions may involve the societal dynamics described below, the focus will be on schizophrenia because the symptoms and stigmatization are so well-known and dramatic.

People with the minor conditions are in the spotlight, and I am happy for their accomplishments and that they were able to get the help they needed. I hope other people with similar conditions can see recovery someday and will be inspired by the examples before them. My concern is that these average Joe success stories are getting all the attention while people with more serious illnesses are once again rendered invisible.

It’s fairly commonplace for people to tell the world, sometimes right off the bat, that they have this or that condition. Sometimes, they don’t even literally mean the psychiatric condition, just an extreme version of a personality trait. A prime example is when someone says, “I’m so OCD.” Do they really have OCD? Not usually, but the personality traits or emotions that OCD affects, perfectionism/anxiety/etc, are especially prominent in that person. They use the psychiatric term to emphasize the extent to which they take that trait. Whether they actually have the condition or not, the real impact of mental illness gets lost. Someone with schizophrenia or another major mental health condition who confesses their struggles with someone else may very well be met with a dismissive response.

“So what? Lots of people have mental illness and they do just fine. People are so quick to pathologize and medicate anyone who’s different” is the general theme of the comments I hear sometimes. People with major mental illnesses are effectively silenced in these conversations and their needs not just for help but for a voice go unmet. The goals of mental health advocacy go unmet when these people are denied a voice. The climate created by the focus on Average Joe Psycho puts people with major psychiatric conditions in a double-bind. There is tremendous pressure for them not just to compete in the endless game of success and one-upmanship that we all get trapped in, but to “do well” by their mentally ill peers. They have to “rep” for people with mental illness by being an inspirational story and being a drug-addicted, homeless, all-around schizo just won’t cut it. In a society where image is everything, the privilege alone granted to those who appear normal on the outside is enough motivation to hide the truth about their illness. However, there is also a very real risk of repercussions for failure to adhere to the standard. Friends and strangers alike will avoid you, colleges and workplaces will not accept you, you could have your status as an emancipated adult taken away, and you are right back in the cell with the lunatics at Bedlam.

Yes, it is sometimes necessary to declare mental patients incompetent when they are a danger to themselves and others. People with mental illness, especially those who are actively psychotic, can be hard to comprehend or reach out to. They may push you away.

The major difference, in my mind, is that most other illnesses are, by their nature, easy to relate to. We all feel anxious, depressed, and just not well sometimes. It can incapacitate us, even if we are otherwise mentally healthy, if we are under the right circumstances. We want to hear about recovery and success from people who have these illnesses because they are us. We want to see ourselves succeed and subconsciously, I think we feel validated by these stories.

By contrast, schizophrenia is well outside the range of the typical human experience. There are no easy analogies for those without schizophrenia about the profound apathy, lack of ability to communicate and emote, the slow realization that your imaginary friends have become more real than your real friends, and the fear and hostility you feel towards those you once loved. That overwhelming, but indescribable, feeling that you are somehow inherently different from the rest of the world and that there is this whole world that belongs only to you does not lend itself to everyday life situations. People fear what they don’t understand.

The good news is that schizophrenia IS treatable now, and people with schizophrenia are fully capable of holding down jobs, pursuing an education, and having an active, happy life doing what they want to do. Looking back at a time when people with schizophrenia had a lifetime of institutionalization to look forward to, these people are spectacular successes. Why are we not seeing these stories in the media? Why are these people not employee of the year or giving graduation speeches at top colleges?

The answer is that schizophrenia “upsets” people. A story about the challenges of schizophrenia and recovery are frightening, painful, and the average person just doesn’t get it anyway. We pity the blind student, the deaf student, and the student with a specific learning disability like dyslexia. We just think those students are so cute for going to school and playing with the other kids. But people with schizophrenia frighten us. They are seen as liabilities and embarassments, dangers to society who could snap at any minute. Why could any selective college promote such a person?

On the other hand, if you are too successful, they might not believe you are really sick anyway. It comes back to the “Big deal, everyone’s crazy nowadays” line of reasoning. You avoid some stigma that way and you also avoid crucial support on the road to recovery that you desperately need.

The irony of all this is that by pretending to be normal at all costs almost guarantees that, at some point, it will become too much to bear and you WILL end up just like those other mentally ill people that no one cares about, homeless, possibly drug-addicted, crouched in a corner, afraid to talk and move, an anonymous runaway with only his imaginary friends to keep him company.

On a practical level, schizophrenia, brain injuries, and other similar illnesses are hard to accomodate. ADHD may require some extra time to complete tests and homework, and dyslexia might require the use of a tape recorder during lecture. More serious illnesses require much more extensive accomodations and colleges and workplaces just aren’t getting their money’s worth. It’s much better to accomodate an easy disability, present their token effort to the world as an example of their sainthood, and their good deed for the day is done. Modern mental health advocacy, unwittingly, gave organizations an endless supply of cute token efforts. All they have to do is shop for the right candidate.

The prevalence of addiction, suicide, homelessness, poor health, low employment and educational attainment, and victimization in people with schizophrenia and similar illnesses is something that should be at the forefront in the mind of every advocate. Equal access, rights, and visibility for ALL mentally ill is our ultimate goal. Those people rocking and talking to themselves are actual people with feelings and desires. They had families, jobs, and were top-notch students at one time. They had achieved things. And they could achieve more if they were given the chance. They have potential. They aren’t one of those people that bad things happen to. They aren’t someone else’s problem or token efforts.

People like John Nash are the exception, not the rule.

Depression, anxiety, attention deficits, and a parade of other illnesses have been brought out of the shadows and the potential behind the illness revealed. Yet after years of awareness, people with schizophrenia remain invisible.

Disseminate far and wide and feel free to leave comments.



  1. erylin · February 19, 2011

    bravo. I have worked with the mrdd population and people with TBI for 15+ years. So many people want to “other” them when all they want is someone to listen to understand. IT is easy to discount people, call them names and push them aside…but they are people too. and they deserve the respect you and i deserve.

  2. Pingback: Still invisible after years of awareness « Dead of Winter : Schizophrenia Page

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