Stigma: it’s in the little things

sad womanStigma is about the little things.  The averted look, the space people suddenly give you when your child is behaving oddly or aggressively and the expression that says clearly, “Why don’t you control your child?” It’s those little things that wear you down. They appear so subtly, so fleetingly sometimes, that a strong reaction seems out of place. So we get a little more vigilant, become deliberately less sensitive to the people around us and learn to get through our day.  The little slights sting and sting again, like being punched on the same bruise over and over.

It’s only the big stigma stories that get attention, yet while they are important they happen less frequently.  The little things happen every day.

We all have our stigma stories.  They are like war stories that we tell one another as comrades in arms.  I remember a couple telling me a number of years ago about their 12 year old son.  He was being treated for depression and they put him in parochial school where the class size was smaller.  It worked for a while.  Then the mania, the fixation on death and blood, the impulsiveness and the risk taking rushed in and they began to understand that they were dealing with much more than depression.  He began drawing pictures of his teachers, his friends and family covered in blood or dying.  “We can’t have this,” his school said. “You’ll have to find a new school elsewhere.”  His parents asked me if he had been newly diagnosed with a medical condition, would the school have made the same decision?

We gasp and shake our heads when we hear these stories.  It’s stigma, it’s lack of education, we say.

But it’s the small hurts caused by stigma that are often harder to bear.  For me, it was the time the nurse in the pediatrician’s office read my son’s chart (with multiple medications, diagnoses and hospitalizations listed) and I watched the look in her eyes change.  The way she touched him to take his temperature and blood pressure went from confidence to wariness and when she left the room, she sent someone else in to finish the rest of the visit. It was the look in other parents’ eyes when my son was on a carousel and every time his horse rounded the bend to cruise past me, he yelled, Snot! Barf! and the words got worse and worse.  I stood helplessly there waiting for the ride to end while I endured the looks of pity and contempt.

In a study in 2010, researchers examined stigma focused on children’s mental health and found that there were three targets of stigma.  The first, as we all know, is the child or teen who has the mental health challenge. The second target is the family or caregiver.  Mothers, they noted, perceive more stigma than fathers and parents of children under 12 experienced more stigma by association than those with older children. Unsurprisingly, this increases what researchers call caregiver strain, or the stress of coping with both the child’s mental health issues, the impact on the family and the additional stress of dealing with the reaction of others.  The third target of stigma was mental health services themselves.  This was seen in a variety of ways from communities opposing group homes or clinics locating there to stigma toward mental health providers themselves.

The small, frequent experiences of stigma hurt in several ways.  There is the hurt you feel for your child.  It’s not just for what is on their plate each day – in fact there are days we admire our children and their creativity and strength.  It’s the looks they receive, the slights they experience and the subtle shunning.  Then there’s the more infrequent but still painful experiences that their siblings go through.  The teacher who also taught their brother who says, “Oh, you’re John’s brother.  I see.”  The receptionist at the dentist’s office who gives a fake smile and remarks, “Oh yes, your sister was in here last week.”

Finally, there’s our own hurt as parents.  It’s a smorgasbord of our own experiences and those of our children.  Whoever said stigma is going away hasn’t walked in our shoes.

Fighting stigma is important work.  It’s one part education, two parts advocacy.  There are a lot of misperceptions about children’s mental health needs out in the world.  Campaigns such as Bring Change 2 Mind encourage people to tell their stories, to initiate public awareness events and use social media to start conversations and well, change minds.  But until we see the small things, the looks, the pained smile and the slight drawing away lessen or even stop, we cannot say that we’ve vanquished stigma much at all.


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