Tag Archives: stigma

Years after I was called a liar, parents are still told they must be part of the problem

May 12th, 2020

When my son was eight, the psychologist called me a liar.  Upon reviewing my son’s psychological test results, Dr. W said that either he was a very sick little boy or his mother – that would be me – was lying through her teeth.  Or at least exaggerating. I was rocked back on my heels, shocked speechless, angry and hurt, well you get the picture.

My son had just been given his third psychological assessment, this time by the school.  He was in his 4th hospital stay and we were all worried. The evaluation was done in a psychiatric unit where my third grader had been inpatient for two months and counting.  He sometimes saw things that weren’t there, believed he could float if he jumped from the tippy top of a swing set and talked often about the ways he would kill himself.  Every medication trial seemed to make things worse.  So here he was, missing Halloween and Thanksgiving, while his doctors and therapists tried to figure out what to do next.

The school hired an outside evaluator.  Dr. W gave my son the usual battery of tests (this wasn’t our first go round) including an IQ test, skills tests and projectives.  He also had me fill out some information including one test where you answer the same question asked in different ways.  First, it would ask you to rate, “My child loves playing outdoors” then several questions later there would be some variation like, “Playing outdoors makes my child happy.”

This was high stakes testing for me.  I was scared for my son.  I didn’t know what the future would bring.  I was hoping the school would agree that he needed a program instead of his regular classroom with a brand spanking new teacher.  So I answered the questions carefully.  Usually I remembered what I had written just a few questions ago.  I wanted to get it right.  The psychologist noted that I consistently reported behaviors that were very frequent and intense.  Since this was unusual, he wrote in the report for the school, either my son was very sick or I was “exaggerating the child’s symptoms.” In short, I wasn’t telling the truth.

Fast forward to today and here we are in May, trying to stomp out stigma for mental health month.  This has personally been my crusade for countless Mays and the 11 months in between.  Stigma comes in many forms in the lives of families whose children have mental health problems.  Stigma actually has three parts:  lack of knowledge, negative attitudes and excluding behaviors. Our children experience the “excluding behaviors” when they aren’t included by their peers.  It’s the parties they aren’t invited to or sitting alone in class.

Unlike when my son was small, there are now a great many parents who share their experiences and their heartbreak bravely and with honesty.  They are trying to combat “lack of knowledge.“ They talk about the bad school meetings, treatments that missed the mark, lost work days and high cash totals spent on items insurance declined to cover.  All that is terrible.  But it’s the stories of other people blaming parents that are the most heartrending for me.  That’s what stigma looks like.  That’s what stigma feels like.

Sometimes parents tell of children who see things that aren’t there or behave erratically like mine did.  Other children talk about wanting to die or bring up what death is like again and again. Others have outbursts that go way beyond tantrums and parents sometimes become the target of their child’s violence.  Like me, they are shocked to find themselves living this life.  Like me, they feel disbelief when they are blamed.

Tina, the mother of a teen daughter wrote, “I think if some clinicians didn’t have stigma issues, we would have been able to get my daughter diagnosed much earlier. Instead people were much more willing to believe that I was a terrible parent who was ‘causing’ my child’s outbursts and issues.”  She is not alone.  Parents are at first sure the error is with themselves.  If they had been more emotional or less, if they had explained more details or used more jargon, maybe they would have been believed.  Maybe they wouldn’t have faced “negative attitudes.”

Recently, a parent described how she recounted her son’s outbursts to a new therapist.  Her 14-year old was acting calm while she talked, even rolled his eyes a bit.  The therapist did not believe her.  She started jotting down notes of what her son screamed at her, what had happened to set him off and even how long the outbursts went on. She brought her notes in a few visits later.  She also tried different approaches to convince the therapist.  She was emotional, she was calm and once even tried being silent, only offering the notes.  It was only after she recorded a video of a particularly intense episode on her phone, with her son swearing, threatening and throwing things that the therapist sat up, focused and let her disbelief fall away.  “First, let’s figure out a safety plan,” she began.  “I have some other ideas, too.”

There are many therapists and evaluators who are stellar.  They are kind, empathetic and listen well.  I have known quite a few over my son’s life and they have been a frequent lifeline.  But just as a rage-filled driver might make you avoid a particular route for a while or rude salesperson can prompt you to shop elsewhere, you vividly remember it when you encounter parent blaming.  For a very long time.

 

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No bra or no visit, which one will you pick?

April 15th, 2019

I survived my son’s teenage years the best way I could. I read a ton of books, went to multiple therapists to get help and reached out to other parents.  When he was in residential, I talked to another mom asking if she found it hard to have a child in a placement like I did.  Sometimes I felt the stigma, the shame and blame of feeling like it was all my fault and people were judging me.  One of the hardest days was when I had to show up with him in court on a felony charge because his impulsive behavior caused damage over $250.

I was too strong to be humiliated. I was a mom who loved her kids and just would not allow it. Humiliation was not something I was going to feel when raising children who needed more treatment, help with trauma caused by a dysfunctional systems and therapeutic work with me as the mother who would try hard over and over again.

But then it happened. Humiliation came in a way that I could not ever have planned or prepared for.

My son needed substance use treatment, mental health treatment and a kind of supervised housing that didn’t seem to exist.  Instead, he ended up arrested again and in jail awaiting trial.

I arrived at the jail on a visiting day, feeling very nervous. The same kind of nervous feeling that I’d had when I visited him in residential, in the hospital or went with him to court.  I smiled at the other people who were also there waiting to visit their loved one. I noticed I was the only white person. Everything I have read is true again. Racial disparities show up immediately as people await to see their loved one.

I have all the filled-out paperwork in my hand, ready to show it. I have checked off all boxes answering their questions.  Have you committed a crime? Are you a citizen? When and where were you born? I go through the line and pass through the metal detectors, ready to get on the bus which will take us to the visiting area.  I am still nervous and scared.  I will be okay, I tell myself. I have been scared before. I will visit, cry and then say goodbye.

A week later, I get ready to go back. Okay, I tell myself, I can do better this time. I remind myself not to bring in my wallet, but take my keys, so I won’t have to store things in a locker this time. I see some of the same people and we share a smile and say how are you.  But this time something is different. When I arrive I am immediately told my paperwork is not done correctly. The guard at the desk looks and comments to the other female guard, “See I told you the inconsistencies are everywhere.” I smile only inside my heart and think immediately to myself, “wow.” But I remain quiet as I wait.

When I get in line, my experience takes a huge jolt.  I walk through the metal detector and am told immediately, “Do it again.” I don’t understand – my keys are not in my pocket, my rings are off, shoes and jacket go through so what’s going on?  I walk through again. This time the guard demands, “Do you have any undergarments with wires?”

“I have a wire in my bra,” I say. She looks at me and states, “You can’t go in with that on.” I immediately explain, “I was in here last week and they did not mention that.”  She looks at me and says, “Take it off or no visit.”

What!!! Are you kidding me? No bra or no visit? Is this for real? I am immediately humiliated and I want to sob. I want to scream and I am so embarrassed but more than anything, I want to see my kid. Instead, I am quiet and go to the bathroom and take off my bra.  I am wearing a white shirt, which would have been the last thing I’d have picked if I knew this was going to happen.  I put it back on, and am completely shamed, humiliated and feeling like a disgusting woman. I walk out and everyone is looking at me walk through again.  The guard takes my bra out so everyone can see.

What have I done to be humiliated like this? I look at her and explain that the comment that I heard in the check-in about inconsistencies is real and unfair.  Her comment to me was a smirk back.  Now my Italian/Irish temper is rising and anger hits.  I say, upset, “Why are we treated like this? I did not think this would happen when I came here to see my loved one did you? “Everyone else nods but is quiet again.  I am so upset and feel so humiliated.

Interestingly enough the next woman came through with a whole corset on and kept it on.

I am fuming.  Why are we taking off our bras but we can bring in our keys? Why are we given smiles when we are told that if we want to see our kids then we need to take off our bras?

Something is wrong when we treat moms and other relatives in a way that makes them feel horribly embarrassed.  I am a mom with a sick kid. I am a mom that deserves to be treated with respect. I am a mom that deserves to be respected and understood, not judged /characterized as part of the problem.

When can we work on being treated like people?  I want my visit so I will take off that bra for now. But I want things changed.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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What is sick enough?

January 28th, 2018

What is sick enough?  Is sick enough a meaningless number or stupid hospital band?  Is sick enough the size of your thighs? Or that dead look in your eyes?

Is sick enough really what we are trying to achieve? What even is “sick enough” besides some bullshit phrase our eating disorders engrave into us?

I can tell you one thing, I have never felt “sick enough.” Even when I was on my death bed I still didn’t feel sick enough. And why? Because sick enough isn’t real, there will always be another demand from the disorder, inpatient or not, weight loss or not, there will always be more.

Take a moment to think about the stigma around eating disorders.  What does a stereotypical eating disorder sufferer look like, both in society, with this idea of an underweight cis-gendered white woman even within the recovery community and with professionals who deem the severity of this mental illness through the severity of the physical side effects shown on someone’s body. If there is one thing I’ve learned through my various hospital admissions it is that how someone looks has very little to do with what’s going on within their body and mind. Someone may look healthy and can still be severely ill, and gender means absolutely nothing.

That some false measure of “sick enough” exists is engraved into our heads the moment the eating disorder comes in.  And even when we open ourselves up to treatment, many people fear reaching out to ask for help because they are concerned they won’t be taken seriously. The eating disorder and frankly, some treatment providers intentionally or not, preach this idea that in order to be sick enough you have to reach some sort of bullshit status. Whether that be inpatient, a diagnosis, or a weight range this idea of sick enough manifests in various ways. When in reality it doesn’t really exist and everyone is “sick enough” to deserve help.

To go a little further, I’m now going to swim into the pool of treatment centers, how do you get into treatment for your eating disorder? Through a mental but primarily physical exam, which is a whole different issue in itself. If you’re lucky you’re in, assuming providers decide that you are “sick enough”. But what happens when you have an eating disorder plus other mental health issues? How can you receive help for both? Unfortunately overlapping help is often not accessible, so people are treated for one thing or the other, but rarely both. I’ve been turned away from receiving treatment for my eating disorder due to my other mental health disorders and I’ve also been turned away from treatment for my other mental health disorders due to my eating disorder. There is always a major fear factor when treatment centers are faced with multiple issues within a patient, so these other issues are commonly ignored.

Something providers lack is the knowledge that these mental illnesses are completely intertwined. With an eating disorder there is a lot of anxiety and OCD and eating disorder behaviors can be extremely connected. Underneath the eating disorder there are surrounding issues. Eating disorders are often avoidance behaviors, meaning that there is an underlying issue, but when turned away from help for these underlying issues due to fear from providers; what’s left is a lack of coping tools.

The solution, while hard to achieve, is entirely possible.  It’s a more collaborative approach. Because these illnesses are very connected it is valuable to have treatment that is unified. In my opinion, the line between treatment for psychiatric disorders and eating disorders is much thicker than necessary since both disorders are mental disorders.

Emily is a young adult who uses art and social media to express emotion, educate and provide support and hope for peers struggling with eating disorders and mental health challenges.  Follow her on Instagram @ reconstructingemily

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Breach of trust, breach of privacy

December 3rd, 2017

“I was walking down the aisle of the grocery store,” Greg said, “and in the next aisle I heard my son’s teacher telling someone the details of his abuse.”  I was driving Greg, a dad of three, to a local radio station where we were going to be on a talk show about children’s mental health.  We had only met over the phone and quickly told each other the brief version of our lives:  how many kids we had and what kind of mental health issues we grappled with.  The conversation quickly turned to our war stories, the stories of hardship and crisis, partly to prep for the interview.  That’s when Greg told me about overhearing the teacher.

Greg was a single father of two boys and a girl, all of whom had different diagnoses.  His second son, his middle child, had the most on his plate.  He’d had several psychiatric hospitalizations, rotated through several medications and bounced around among therapists.  Right now, Greg was trying to get his school system to see that the child they had enrolled a couple of years ago was a far different child with more serious needs.  He had debated with himself, then told the school the details of his son’s story, hoping it would create an “aha” moment.  I’m sure it did, but it also led to a privacy breach.

Greg and his wife had divorced when the children were small and they had gone to live with their mom and her new boyfriend.  He saw them irregularly.  Greg moved in and out of the state, had several jobs where he tried out a few things.  Some were successful, some weren’t.  Then one day he got a call saying there had been charges of physical and sexual abuse against his ex-wife’s boyfriend and could the children come live with him?  He immediately agreed, somehow thinking that his children would be the same as when they were preschoolers, just older versions of the children he had lived with every day.

They weren’t.  Each of them had been through a lot and expressed it differently.  His oldest son kept saying everything was fine but had nightmares at night.  His youngest, his daughter, was clingy and didn’t want to let him out of her sight.  His middle child had received the brunt of the abuse and alternated between hurting himself and exploding with pain and anger.  Greg, bless his heart, had to learn three different styles of parenting in very short order.

The day he heard the teacher telling someone the graphic details of his son’s abuse, the child was with him and heard it too.  The boy began sobbing and curling in on himself.  Greg told him to wait with the grocery cart and stalked over to the next aisle where he had a few choice words to say.  He felt a little better but he couldn’t unhear it and neither could his son.  Neither could the person who was told the story.

Parents tell me over and over again that they simply don’t trust school staff with their child’s mental health information or history.  They worry – without knowing Greg or his son – that something similar will happen and they fear it will hurt or infuriate them.  There are exceptions to this – parents report that they trust special education teachers and school nurses to a great degree.  Sometimes there are individual teachers who “get it” or have raised a challenging child of their own.  These are the people who translate the symptoms, like Greg’s son’s meltdowns, into working diagnoses and unmet needs.   But they seem to be a small group.

Things happen to children through no fault of their own, resulting in trauma and difficult behaviors.  Sometimes things happen within children, too, that are beyond their control, such as overwhelming moods or crushing anxiety or ping-ponging thoughts. Until they learn tools and strategies, behavior is often their only way to let others know how they are feeling and what their needs are.   In savvy schools, teachers, guidance counselors and aides can be “first identifiers” and spot the things that should concern us and raise the red flag.  In schools like the one Greg’s son attended, that seldom happens.

Parents worry a lot about privacy.  Information about us is collected by everyone, or so it seems, and your children’s information is gathered without their consent. (Often without a parent’s consent either.)  Some information doesn’t intrude into our lives very much so we shrug it off.  For instance, I really don’t care if my transponder tells EZPass how many times I’ve crossed a toll bridge or driven a certain highway. But other information is much more sensitive and can shape how people see us.  Personal mental health information still carries a powerful amount of stigma.

Some mental health advocates say that we should all tell our tales of mental health and mental illness openly. It is, they argue, the only way we will reduce stigma and raise awareness.  Every time I hear that, I think of Greg.  He thought by telling the school about his son’s trauma that he would create compassion.  He expected that the team working with his son would respect his privacy.  The day he heard the teacher talking in the next aisle and watched his son sobbing, he changed.  He learned to tell just enough but not everything.  He learned that sometimes the risk of sharing his story can be too great.  He learned that while our stories can create powerful change, emotional safety matters too.

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Don’t pass by

May 15th, 2016

sad seated girlWhen I was in middle school and early high school, I would see kids in my grade who were struggling emotionally, and I would turn away, pretend I didn’t see their pain, and not give them another thought. I would feel bad, but I didn’t know what to do with that, and I certainly didn’t want my friends to think I cared about the super weird kid in math class who kept to herself. Teenagers can be cruel, and no way was I risking my somewhat okay level in the middle school social economy by showing compassion for someone who was so obviously different, strange, and maybe even dangerous for all I knew. No, I desperately wanted to fit in, and my status with my friends would not be jeopardized by some “emo kid.”

Three years later, I became that “emo kid” who got words like “bi-polar” and “crazy” and “weird” thrown at them as weapons instead of truths. I had my first episode, though it would be 10 years later before the mention of bipolar was brought up in a clinical setting as a feasible diagnosis, and the world as I knew it fell apart. My friends grew more and more distant as the hospitalizations piled up, and I would have given absolutely anything for a visit from my family. Everything I thought I knew about myself suddenly became symptoms of my anxiety, depression, and mania. You mean not everyone is absolutely terrified of social situations but sucks it up anyway? You mean I’m not supposed to consistently want to die at least half of every day? And you’re telling me I’m not supposed to wake up 8 to 10 times every night with bad dreams? And not everyone’s mood goes up and down as quickly as mine?

I found myself sinking deeper and deeper into depression with all this clinical exposure, and when I wasn’t in hospitals, it became harder and harder to pretend to everyone at school that I was doing well. I had appointments during school hours that I played off as doctor appointments, but were really specialists and evaluators to help with my psychiatric treatment. My grades were starting to reflect my absences as well. I was silently suffering, and no one at school bothered to ask how I was.

If I could change anything about my actions in life, it would be how I passed by that girl in middle school and did nothing as people ridiculed and ignored her. Because now I know what it’s like to not have a friend in the world to count on, and I know what it’s like to feel different and strange and unwanted by everyone you know. And how all you want to do is curl up in a ball and die, but you keep going anyway. Now, I don’t see that girl as strange, or weird, or dangerous. I see her bravery and resilience in visibly fighting a fight that none of us understood, but finding the strength to do it anyway.

Everyone who has a mental health condition, is fighting that fight in some capacity every day. Whether it’s hanging on for one more day when all you want to do is disappear forever, or dealing with those awful voices in your head that just won’t stop and are often very scary. Or going through trauma therapy or trying to get over your anxiety. Or even just talking with someone when you need to, or helping someone you think might need it. These are all very hard steps, and if someone, anyone, at school had stopped for me instead of passing me by, my journey might not have needed to take as long as it did.

It wasn’t until I was in the same shoes that I found my compassion, but it doesn’t need to get to that point. After all, we are all fighting something, some of us are just better at hiding it. Be kind. Be compassionate. Be open to embracing differences, not afraid of them. And don’t pass by.

Our guest blogger is a young adult who wishes to write anonymously.

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