Tag Archives: stigma

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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Slapped by stigma

May 9th, 2016

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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But you don’t act like you’re [insert mental health diagnosis here]

November 29th, 2015

Girl 1I have bipolar disorder. After years of struggling to find an appropriate diagnosis, years of misleading, suggested and “not otherwise specified” attempts to pin down what was “wrong” with me, I finally feel satisfied with the diagnosis I’ve been given. This is, of course, after an odyssey of inpatient psychiatric hospitalizations and a couple of times at residential treatment centers, which spanned almost a decade of locked treatment in my 23 years of life. That doesn’t even include the time spent in therapy.

I have been out of psychiatric facilities for over two years now, after years of truly believing that my future was forever destined to either be called “crazy” and locked up, or take a path that would lead to my eventual, self-induced demise. I was absolutely convinced that I was an awful person who deserved that bad hand that I’d been given, and that I was better off dead than living as a burden to my friends and family.

The other day, I shared my new diagnosis with a close friend, and their response was one of complete surprise and misunderstanding. “But you don’t act like you’re bipolar,” they said. I blew it off as something they said out of a lack of knowledge or understanding about mental health. But then I realized that that’s exactly the problem. Too many people dismiss people with serious mental health needs as being too “normal” or their symptoms as not being “severe enough” to need treatment. When they most need the support they are apparently not to be taken seriously.

How exactly is someone with bipolar disorder, depression, schizophrenia, anxiety, PTSD, you name it, supposed to act? Because I believe that that’s part of the problem, the belief that people with mental health needs have noticeable traits that set them apart from the rest of society. That you can pick out the “crazy” people from the crowd and somehow “protect” yourself or your family from their “dangerous” influence, as the media would have us believe. And it’s this negative misconception that leads people who need treatment, often times for their own safety, to not seek it out, to be afraid of what the people they love might think.

Well, let me reveal something to you. Mental health struggles can happen to anyone, at any point in their lives. That’s right, I said anyone. So it could be your kid’s kindergarten teacher who’s bipolar but manages well enough with the right medications and her weekly therapy sessions. It could be the employee in the office who makes everyone else laugh because bringing people joy helps keep his depression in check. And it could be you, someday. The thing that all three of those examples have in common is that all those people would be categorized in the “normal” category. They don’t “look’ “sick”…but they are.

So I guess what I’m trying to say, is that if someone confides in you about their mental health status, support them. Don’t discount their experience or not validate them because you’re only seeing the good days. And, as a whole, we need to stop thinking (consciously or unconsciously) that mental health is this scary, dangerous thing that should be feared and will *hopefully* never happen to us. But believing that, and acting accordingly, reinforces the stigma that so many of us who receive treatment experience. And wants to contribute to that?

Our guest blogger is Dani Walsh.  Dani is a 23 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing

 

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