Slapped by stigma

pointingHave you ever been slapped in the face by someone’s prejudiced thinking about mental health needs?  That’s called stigma.  It first happened to me when my son was seven.

My son spent a lot of his 7th birthday party lying on the floor at Chuck E Cheese crying and saying, “I don’t deserve to live – I want to die.”  Like his friends, he would race excitedly from game to game, then run back to me to say, “Guess what I won?”  Then his mood would plummet and I’d see him drop to the floor, disconsolate.  His friends would stop next to him and try to cheer him. Not long after, he had his first inpatient stay.

A year before, we had moved into a newly built housing tract.  The school district was good, the neighborhoods were designed with curving streets and cul-de-sacs, which made them perfect for families with young children who rode their bikes and skateboards.  All the houses around us seemed to be filled with kids the same ages as my two sons and they were soon traveling as a posse to one another’s houses to play with this game or try out that swing set.  Families invited each other to parties and outdoor barbeques.

After my son’s hospitalization (which lasted nearly a month) he insisted on going to each of his friends’ houses to let them know he was home and available to play.  I asked him what he was going to say.  “They told me at the hospital that lots of kids go to the hospital to have an operation or because they are sick,” he said.  “It’s just like that, except it’s your feelings. It’s okay to talk about it.” I felt that little clutch in my stomach that mothers get when they worry.  But what did I know?  This was a new world for us and if the “experts” told my son it was okay to talk about his hospitalization, then I was going to defer to them.

He set out on his neighborhood journey, going from house to house while I stood a little distance behind him.  He did great, shaky a few times but was met with smiles and nods for the most part.

Not long after we got back home, I got a call from Denise’s mother.  Denise was doted on by her parents and had been born some years after her older brother. They lived cater corner across from us and she played often with my son.  Denise was perfectly dressed, her blonde hair done up in dozens of new ways each week.  Denise’s mother was not all smiles and nods on the phone.  She told me that although she felt sorry for my son, Denise was not allowed to ever play with him again.  If he came to the door, he would be turned away.  If he called, the phone would be hung up.  If he was playing in their neighborhood group, Denise would not be allowed to join in.  In fact, she added, she would appreciate it if I told him when he walked in front of their house to please use the sidewalk on the other side of the street.   The rejection couldn’t have been more complete.

I told my son a gentler, highly-edited version of the conversation and it’s something he doesn’t remember today.  But I do.  My judgemental neighbor went from embracing we-are-all-raising-our-kids-together to making it very clear that there were two groups now, “us” and “them.”

Many people believe that there is less stigma today around mental illness, treatment and even psychiatric medications.  They point to the growing number of stories that people like me tell of their own experiences, or that people with their own lived experiences relate.  These stories don’t just provide a name and face, but details about what works and how it feels to experience the slings and arrows of a very tough mental health system.   But an experience with in-your-face stigma changes you.  You lose patience with slow change. You can’t go back to thinking that it’s lack of education or inherited attitudes.  It’s more than that.  Stigma is an ugly thing.

Researchers say stigma is a term “which has evaded a clear, operational definition.”  It actually has three parts:  lack of knowledge (ignorance), negative attitudes (prejudice) and excluding behaviors (discrimination).  Like many others, my son and I have experienced all three.

Stigma is not just carelessly using words like crazy or psycho. It’s shunning like my son and my family experienced.  One mom told me recently that her child was ostracized by her ex-husband’s entire family, who wished to hide her son’s mental health needs.  It’s seeing your child shunted to the psych evaluation room from the emergency room as soon as they hear the mental health diagnosis.  Another mom recently wrote, that even though her daughter overdosed on pills and was violently ill in the emergency room, “they stuck her in a psych room with a security guard” because they “thought she was faking it.” It’s being denied opportunities like the parent who told me she had to choose between a therapeutic school with a stripped down curriculum, or an academically challenging one with no therapeutic supports for her brilliant, beautiful daughter with extreme mood swings.

The hurt caused by an experience with stigma stays with you for a long time.  You feel a little more mistrustful, a little more righteous anger and have warring impulses between disbelief and cynicism.  I’m hurt, you feel; this is unjust, you think; this must stop, you realize.  We need to keep telling those stories, we need to keep waging our awareness campaigns but we need something more.  We need warriors.


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5 thoughts on “Slapped by stigma

  1. Thank you Lisa!
    My husband had sung in the choir in church, and I taught religious education. People pulled their children out of my Sunday school class. Families who had known my husband from childhood would move to another pew when we sat down. Intellectually, I want the anti-stigma campaigns to work … but I worry about the safety of our loved ones in the media. Families have lost jobs, housing, and been ostracized. I share my experiences often face to face but people can be mean. I do not want them to hurt my children.

  2. Hi Lisa,
    I am sorry for the pain you and your family endured due to stigma and am in awe of your strength in turning your pain into something positive and helpful for all of us. Despite that, I have serious concerns in doing the same….in openly speaking up and telling my children’s story instead of remaining anonymous.
    My children are adopted and, in learning about adoption, I was cautioned that their birth history was THEIR story not mine to tell. Also, it was tricky to know when to disclose their history to them as, once their story was “out,” there was no taking it back and, “people can be mean and judgmental.” I needed to wait until they developed some maturity. I feel the same is true for their mental health history. It is also their history to tell or not. They will live with the life-long consequences that arise from the stigma and the prejudice which can come with having “mental health issues.”
    For the general public and, if I am to be honest…even myself….the issues around mental health problems are fear provoking. Just looking at the headlines in recent days….the man who sought ER help for suicidal tendencies and was discharged without treatment, only to go on a stabbing/killing spree. I am sad and angry about what these victims and their families have experienced. Our family has had first-hand experience with the lack of an immediate, effective response in mental health emergencies. Having this knowledge only increases my fears.
    As a parent of children with mental health issues I should be more open and understanding when it comes to other kids but….if I am to be totally honest, I am afraid. When my sons were in placements, I was afraid of what they might see or experience…these are my kids, I am supposed to protect them… what if…..?
    I don’t have an answer to this dilemma….and wonder if there is
    Mom from Massachusetts

    1. Thanks for sharing your thoughts. My son is also adopted, and I agree with you on the fact that it is their story to share, not mine…although, I don’t have all the answers to when is it right for him to share…

      At any rate, I experienced something similar to the original post where a next door neighbor would not let their child play with my son. I really didn’t know what to call it until now – shocking was my first impression…then the stages of grief. Stigma. That seems so appropriate.

      I have a journey ahead of me as my husband also died by suicide. More stigma, but I was better educated to know that this was his choice, not mine. Still, the stigma remains and will be something my son will face when he becomes old enough to understand.

      People amaze me in many different ways; good and bad. Sometimes I find it very challenging to not get discouraged over the insensitivity of others.

  3. Discrimination happens toward any person with a health condition. You can educate people but you can’t make them change. Rejecting people with any health issue is so cruel.

  4. Discrimination happens toward any person with a health condition. You can educate people but you can’t make them change. Rejecting people with any health issue is so cruel.

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