Overcoming Stigma

I was sitting alone in the hallway of the Carter Center conference area in Atlanta during the 2012 Rosalynn Carter Symposium on Mental Health Policy. I had just finished being a panelist and talking about how employment and education helped me overcome the stigma associated with my depression. The conference was still in session, so I had the hallway to myself. I sat quietly, reflecting on the fact that I had been invited to speak here as both a clinician working in community mental health and a person living with depression.

Two scenes flashed through my mind highlighting two very different points in my life: getting offered a job as a therapist at the mental health center where I completed my internship for my Master’s in social work, and sitting in a psych ward on the eve of my 18^thbirthday, wondering if I would graduate from high school.

Persevering Through Depression

It took many years of perseverance for me to become that professional sitting on a panel at a national conference. Though I managed to graduate from high school, I dropped out of college at 19 as my depression worsened. I was unemployed, and my only income was Social Security disability. Years of failed depression treatments included medication and talk therapy.

I spent most of my time alone doing what I refer to as “stewing in my own depressive juices.” This lasted for 10 years. During that time, I was challenged by the symptoms of mental illness— insomnia, loss of appetite, lack of concentration, suicidal thoughts. After a decade of being unemployed and living on Social Security, I decided that for my own survival, I had to return to school and complete my social work degree. Of course, my depression was against this:

“You can’t go back to school; you will fail.”

“You won’t be able to concentrate enough to complete your assignments.”

“You’re too stupid to get a college degree.”

Somehow, I decided to talk back to these negative thoughts. My response was simple: “I’m just going to do the best I can.”

And I did. I got myself back to school and finished my degree in social work. Around that time, I also tried a different treatment for my depression, and it worked. Things got easier.

Today, I feel incredibly lucky to say that I am doing exactly what I want to be doing. But really, luck had little to do with it. Besides my symptoms of depression, I faced an additional barrier to school, employment and inclusion in general: unhelpful attitudes from well intentionedhealth professionals—in other words, stigma.

Learning To Reject Stigma

One mental health professional once told me, “Maybe you’re not getting better because you’re not trying hard enough.” Another warned me, “You might not be ready to go back to school full time. Shouldn’t you just take one class and see how that goes?” A psychiatrist decided, without asking for my opinion, that I should be sent to live in a group home for people with mental illness. (That did not happen, and that treatment relationship ended that day.)

These scenarios were fueled by the stigma associated with mental illness—stigma that ultimately serves to limit and exclude rather than encourage and include. Had I listened to those professionals, I might never have returned to school or entered the workforce.

So how did I overcome the stigma that I faced? I rejected it. Rejecting—or overcoming—stigma, whether it be self-stigma, public stigma or structural stigma, is one of the keys for those of us living with mental illness. This is not an easy task, to be sure, but it is becoming more possible and a bit easier as more and more of us of speak out about our mental health conditions.

After working as a therapist and witnessing the negative effects of stigma on clients and their family members, I decided to develop a stigma-reduction training curriculum called “Overcoming Stigma.” I spent several months reading every scientific article I could find about stigma research. Most of it simply documented that stigma exists (in hospitals, in psychiatry, in substanceusetreatment centers, in pharmacies, universities, employment, housing, etc.) and that levels of stigma have not changed over the last decade.

According to many studies, effectively reducing stigma pointed to one intervention: contact with someone successfully managing a mental illness. One shining example of this is NAMI’s In Our Own Voice (IOOV) program. People with mental health conditions share their powerful personal stories in this free 60- or 90-minute presentation. I decided to integrate elements of IOOV into the beginning of my trainings by briefly disclosing my own depression and giving a few examples of my experiences with stigma. The rest of the training includes a description of the seven most common types of stigma experienced by people with mental illness and substance-use disorders, research about the effects of these stigmas, ways to reduce stigma, and the clinical and agency assessment tools I developed.

I have presented Overcoming Stigma trainings in many different health care settings, and the curriculum continues to evolve, always guided by the latest stigma research. Recent research shows that stigma training needs to be ongoing instead of a one-time thing and, it likely needs to address many stigmas all at once.

My trainings get everyone involved in the discussion; I like to ask for anecdotes from attendees. Here are some real-life examples of stigma shared by health care professionals who have attended my trainings over the past several years:

• A cardiac surgeon said he would not do surgery on a person with schizophrenia because he didn’t think the person would be able to do the required follow-up care.

• A therapist shared that as a Ph.D. student, he was told he would lose his scholarship if he left for “depression” treatment but could keep it if he left for “medical” treatment.

• A mother puts off making an appointment for her daughter to see a therapist despite her daughter experiencing severe symptoms of anxiety because she doesn’t want her daughter to be labeled as “crazy.”

• A physician attendee said it was well known in her neighborhood that her son had been hospitalized with bipolar disorder and no one acknowledged this fact (much less offered any type of support).

• A mental health clinician working in an emergency room said doctors and nurses often referred to patients in the ER with mental illness as “her patients,” rather than “our patients.”

If I do my job well, attendees leave with the understanding that we all have a role to play in reducing these harmful kinds of stigma. Personally, I still experience stigma, but I am no longer limited by it. I sometimes even chuckle when I hear someone say something particularly stigmatizing because I immediately think, “Well, that’s going to be part of my next training.” That’s not to say it isn’t still discouraging to see or hear things that continue to perpetuate stigma, but for me, there is a feeling of freedom and power in being able to turn a potential lost opportunity into one that is gained.

Gretchen Grappone, LICSW is a trainer and consultant with Atlas Research in Washington, D.C. Her work includes projects with VA medical centers, community mental health centers and other health care settings around the country. She lives in New York City.

https://www.nami.org/Blogs/NAMI-Blog/October-2018/Overcoming-Stigma

When I first started opening up about my struggle with depression, I was fortunately met with a lot of support from friends and family. However, there were certain reactions that brought to my attention just how deep the misconceptions are about mental illness.

I found myself defending my experience and struggle to the people I loved. Even though they meant well, their misconceptions of mental illness ended up having a negative impact on my recovery and made me feel more alone and misunderstood. And that is not an uncommon experience.

When I was struggling, it was easy for simple misinformation to work its way into my brain and make me doubt myself. But now that I am further along into my recovery, I can recognize stigma for what it is and shut it down. So, here are the most common unhelpful responses I’ve received about my depression, and why they are nothing more than misconceptions.

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“But you have such a great life!”
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This is by far the most common reaction I receive when I tell people I have depression. And it stems from the belief that depression is an external condition—if you have a sad life, then you will be sad. What hurt the most about this statement was that I knew I had a nice life. And the fact that I could still experience depression, even when so many people were worse off, just made me feel ashamed and ungrateful. And while it’s true that traumatic events can contribute to the onset of depression, so can your genetics and brain chemistry. So, someone who may seem to have a “perfect” life can still develop a mental illness.

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“Are you sure?”
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While this one may seem harmless, here’s why it’s not: No, I’m not sure. I used to wake up every day scared that I was faking my mental illness. I told myself I was sad, but it wasn’t “bad enough” to be considered depression. I was months into therapy, on medication, working with multiple doctors, and I still didn’t think it was enough validation. So being asked if I was completely sure I was struggling from mental illness just poked at the fact that after all I had been through—all the therapy sessions, medication trials, self-harm relapses and diagnoses—there was still a voice in the back of my mind telling me I was faking it.

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“Have you tried yoga?”
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The amount of people I talked to who suggested I do yoga, go gluten free, or try yet another health or self-care tip is alarming. Especially because these people were not suggesting diets and exercises as a side dish to a main course of cognitive behavioral therapy and antidepressants—they were suggesting them as the full meal. I had people tell me that I shouldn’t take medication because it might “change my personality” (spoiler alert: I wanted it to! Depression had become my only personality trait!), and instead, I should just stick to cycling and/or going vegan. This response completely undermines the reality and severity of mental illness. Because, yes, there are plenty of activities or hobbies that can help someone through recovery (for me it was writing), but depression is an illness and deserves to be treated as such. No amount of yoga is going to completely cure a clinical illness.

“Oh, I don’t believe in mental illness.”

This one’s simple. Some people think the earth is flat. That doesn’t change the fact that the earth is, surprisingly, very round. And you not believing in depression doesn’t change the fact that I have it. Next.

“But you don’t seem depressed to me!”

I’ve had a lot of people tell me I don’t “look” or “seem” depressed to them. A big misconception surrounding depression is that it’s for attention, which means people suffering would have to be very open and vocal about their struggles for others to notice it and give them that attention. But, often it’s exactly the opposite. I hid my mental illness from everyone I knew. I put on a smile, laughed at jokes, did my homework and hid my scars because I was scared and ashamed of what people would think of me. And it’s not uncommon for people struggling with depression to hide behind a mask of happiness. So it doesn’t matter whether or not someone “seems” depressed—they may still be suffering.

I know from personal experience that opening up to someone about having mental illness can be extremely difficult and scary. And if people overcome that fear only to have their struggle questioned and invalidated, eventually they’re going to stop being open. If someone opens up about their mental illness, they are looking for hope and support. And they deserve it. In many cases, they need it. I know I did. And often, the widespread misconceptions surrounding depression prevented me from getting the support I needed. So, I think it’s about time we stop asking people with depression if they’ve tried yoga. Because I have tried yoga. And I’ve found that my therapy sessions work a whole lot better.

Caroline Kaufman is the author of LIGHT FILTERS IN: Poems (HarperCollins). Known as @poeticpoison on Instagram (202k followers), she writes about giving up too much of yourself to someone else, not fitting in, endlessly Googling “how to be happy,” and ultimately figuring out who you are. She grew up in Westchester County, NY and will return to Harvard University this Fall for her sophomore year. In the future, she hopes to attend medical school and continue growing as a writer.