Mental illness: Stigma starts at home

In the aftermath of the horrifying killing spree at Sandy Hook Elementary, there has been lots of renewed attention on mental illness: how to keep the few mentally ill people who are violent from getting their hands on high-powered firearms; how our dysfunctional health care system fails to provide adequate treatment to people with mental illness. 

As usual, it takes a tragedy like this for Americans to summon the political will to consider budgeting more money for treatment programs. And, maybe a tragedy like this nudges people to want to better understand conditions like schizophrenia, bipolar disorder and depression, as well as autism and Asperger’s.

Circling around all these discussions are yet more calls to reduce the stigma around mental illness. 

“Stigma is out there and it makes people feel damaged, lesser.”

So writes Elyn Saks, a professor at the USC Gould School of Law, who described her life with schizophrenia in her 2009 memoir The Center Cannot Hold: My Journey Through Madness. A recipient of a MacArthur Foundation “genius grant,” Saks said in a 2011 Huffington Post blog that she continues to confront stigma, even though she has found, through a combination medication and therapy, a way to lead a fairly stable, happy, functional life. 

Many people with mental illness aren’t so fortunate. They don’t get the treatment they need. And it’s not always because of lack of resources. It’s because it's terrifying to take on the label “mentally ill.” That identity can have pretty far-reaching consequences in terms of gaining--or not gaining—work and housing and in moving through society. Many people with undiagnosed mental illnesses fear being locked up, or are at risk of losing relationships. Stigma, writes Saks, “encourages people to be in the closet when being able to get help from friends, when one is suffering, is very important. Stigma's worst effect is that it deters people from accepting their illness and agreeing to treatment. If mentally ill people didn't have the added burden of stigma, maybe more of them would seek treatment.”

My husband has schizophrenia, which affects about 1 in 100 people around the world, regardless of social, cultural or economic background. More accurately, he has schizoaffective disorder, which can most easily be described as a combination of schizophrenia and bipolar disorder.

He was diagnosed in 2001, and he’s actually a rare case of someone living a stable life -- though his stability is all relative. He still has many bad days when he wonders if he will ever feel any kind of happiness or joy. According to a University of Virginia study, he is in the small minority of people with schizophrenia who have remained  out of the hospital for 10 years or more.

He diligently takes his medication, even though it sometimes leaves him feeling sluggish and makes it hard for him to concentrate, causes his hands to shake, and puts him at high risk for diabetes and liver problems. He takes his medication because he prefers to be free of voices tormenting him all the time and telling him he's a piece of shit. The medications quiet those voices, and allow him to be a loving husband, father, brother and son-in-law. He balances our checkbook and looks after things around the house. He has been able to volunteer for his church and other local organizations, perform fairly well at jobs, though he’s unfortunately found that certain high-stress work environments bring on his most debilitating symptoms – the hallucinations, delusions and paranoia.

He faces stigma fairly constantly. Look, we live in a community where college-educated, professional couples like us, at this point in our lives, should be facing such major decisions as what type of counter tops to put into our new $100,000 kitchen remodels. I surely do envy people who have these sorts of choices to make. We might, in the next few months, be able to afford to buy a few new decent kitchen knives. 

Anyway, my husband is fairly open about his illness, but being open has put him at risk of losing job prospects or of people politely avoiding him in social situations. 

But as I write about how society stigmatizes the mentally ill, it occurs to me that I’m only just hovering around the truth. 

That’s because I think the greatest stigma he faces is at home. For one thing, he says he stigmatizes himself. As he writes in his blog: “My near-constant message to myself is that I am incapable of work, friendship, fatherhood, marriage - the list goes on - because I am mentally ill. I stigmatize myself, believing that I am too broken, too afraid and too dishonest to be someone other than a weak, narcissistic, crazy man. I live with fear surrounding almost every action, thought and encounter. Doing nothing and believing in only the worst are ways I protect myself. I disconnect because I am afraid of my feelings and this feeds my lethargy, isolation and depression.” 

What he doesn’t write about on his blog is how I treat him. He's very kind and circumspect in that way. He assures me that I am always loving and kind but I don’t believe him.  I stigmatize him, too.  I go through periods of being angry and being disappointed that he is sick. I have been quick to blame him for problems in our marriage or in our family.

I feel shame that he's sick and that we don't have certain things, decent health care coverage among them. 

There have been times when it was tough coming home after working, to find him sitting in a chair in our living room, reading a magazine or a book, usually on Buddhism. It’s the same place he was sitting when I left the house a few hours earlier. And it’s the same book. I grumble, I wish I could just sit around and read a book, and contemplate living in the moment and how the various things that scare me -- like financial insecurity or the possibility of him having another breakdown -- might just be figments of our imagination.

Not long ago, I interviewed a law student for a publication I was working on.  In our conversation about why he wanted to become involved in health care law, he revealed that his mother had schizophrenia. He was responsible for making sure she got in to see psychiatrists and get her medication. He said his father hasn’t been very helpful. That’s because his father, an immigrant who holds onto certain traditional ideas, believes that mental illness is a weakness of character. His father, this student said, doesn’t believe his wife is sick. According to him, she is  just “acting up” or “being lazy.”

I’ve been in and out of denial about my husband’s illness since his diagnosis. I sometimes wonder if my husband is being lazy – after finding him in the chair, reading one of his books or staring into space. I blame him and I blame myself for the circumstances we find ourselves in. If I had made different choices in life, maybe we could have weathered this crisis better. Maybe if I wasn't such a big, scared child inside, I would grow up, leave denial behind and live with a measure of serenity in accepting our lot in life 

But I'm defective and broken, too. I've told him on various occasions that I’m sad he’s ill. I mourn that he’s not the husband-protector I imagined him to be when we married, and that our life hasn't turned out the way I'd hoped.  He listens very patiently, kindly. He's always been good at listening to people. He knows I’m angry and says he accepts it. 

And then I feel guilty because I think my anger and disappointment can’t help his already fragile sense of self-esteem.  I know I’m blaming him for things outside his control, for example, the way it can be a daily struggle for him to get motivated. 

There are the so-called “negative” symptoms of schizophrenia. I had to remind myself of these recently. Such symptoms are what you often see in people with depression, and the symptoms cause a lack of motivation, an unwillingness to talk much and inability to enjoy life.  Most people are familiar with the “positive” symptoms of schizophrenia: the hallucinations and delusions, the difficulty in being able to distinguish between what is real and what is imagined. These are the symptoms, we've been led to believe, that prompt violent outbursts and the horrifying killing sprees like those at Virginia Tech or Tuscon, Arizona, and, perhaps in Newtown, Connecticut. 

But the negative symptoms can be even more debilitating, according to the website Understandingschizophrenia.org. 

I know I need to do a better job staying informed about mental illness, including the latest research on brain science and treatments. I also need to stay in touch with the folks from the local chapter of the National Alliance on Mental Illness. NAMI is a phenomenal group, and both my husband and I have been involved with NAMI's Contra Costa chapter on and off over the years. I took its very enlightening 12-week Family to Family course, where I received a pretty extensive education about various mental illnesses and up-to-date information about medications.

One of the purposes of the course was to help me and other family members gain empathy by understanding the subjective, lived experience of a person with mental illness.

I'm still working on the empathy part, and I thank my husband for his love and patience with me. Maybe reading all those Buddhist books helps him stay in the moment and show some loving kindness to his often-living-in-denial wife.  I appreciate him more than I tell him. He is my best friend and the heart and soul of my life.  

Many thanks to Amber Christian Osterhout, a Saratoga Springs, NY-based artist and designer and advocate for the mentally ill, who allowed the use of her image with this post. Osterhout's award-winning Gaining Insight website offers education about mental illness in order to reduce stigma.