Ending the Erasure of Mentally Ill Experience

Mental illness has been, and without a doubt will remain, the defining experience of my life. I’ve aspired to normalcy, I’ve fantasized about sanity, I’ve wanted to be someone without a mood disorder more than I’ve ever wanted anything else in my entire life. I recognize that this isn’t how it ought to be, but any other characterization would be dishonest.

This deep desire to be something other than what I am seems to me to have two primary causes:

1) The profound mental distress I’ve experienced and the way it’s interfered with my life.

2) The mainstream ignorance of the reality of mental illness.

Sure, the world at large knows that mental illness exists. But this superficial awareness hasn’t prevented a widespread fear and outright dislike of people living with mental illness. In a 2010 article in The L.A. Times, “Mental illness stigma lingers even though people understand it’s a brain disease,” Shari Roan reported on a study regarding attitudes toward mental illness and the mentally ill. The study looked at attitudes over time, and found little had changed from 1996 to 2006.

Roan wrote that, “For example, the percentage of people who said they are unwilling to work closely with someone with major depression was 46 percent in 1996 and 47 percent in 2006. The percentage of people who considered people with schizophrenia to be a danger to others was 54 percent in 1996 and 60 percent in 2006.”

Aware of this considerable stigma, the community of mental health advocates and organizations are focused on ending it by tackling it directly. The National Association of Mental Illness (NAMI) has a monthly “StigmaBusters Alert” that focuses on harmful portrayals of mental illness in pop culture and the media. Medical websites, such as the Mayo Clinic, often have portions of their website devoted to mental health stigma. Celebrities like Glenn Close have come forward to be spokespeople against stigma.

And while all this is admirable, and I’m sure many of that these organizations have the best of intentions, I doubt this is really enough. Ending the stigma of mental illness is important, but that alone doesn’t facilitate a real understanding of what it means to live life with mental illness.

To be mentally ill is to have a fundamentally different experience of life from those that are not mentally ill. Sanity is privileged, any break from sanity is not a choice, and the mentally ill state of mind is generally excluded from mainstream awareness. Being mentally ill in a world that barely conscious of what it means to be mentally ill is to know a fundamental part of yourself is invisible.

In order to bridge this extreme marginalization, we need more honest depictions of mental
illness. One of the most sincere descriptions of mental illness I’ve read is in David Foster
Wallace’s Infinite Jest, when one of the characters describes her mental illness shortly after being institutionalized after a suicide attempt:

This is a feeling. I feel it all over. In my arms and legs…It’s all over everywhere. I don’t what I could call it. It’s like I can’t get outside it to call it anything. It’s like horror more than sadness. It’s more like horror. It’s like something horrible is about to happen, the most horrible thing you can imagine—no worse than you can imagine because there’s a feeling that you have to do something right away to stop it but you don’t know what it is you have to do, and then it is happening too…I fear this feeling more than I fear anything, man. More than pain, or my mom dying, or environmental toxicity. Anything.

This is a work of fiction, but I don’t doubt that David Foster Wallace was drawing on his own experiences—he suffered from severe major depression and substance abuse issues, was hospitalized on more than one occasion, and ultimately committed suicide. I believe that sincere accounts of the perspective of mental illness, like Wallace’s, are critical because they make the experiences of the mentally ill visible.

I appreciate this genuine account of mental illness because it’s similar to my experience, and it’s a fact of my experience that’s had a powerful effect on my life—but it’s an experience that is hardly acknowledged, let alone discussed anywhere. This reality isn’t addressed in the media, the DSM, or by mental health organizations. It’s time for that to change, and for us to explore the many different realities and voices of mentally ill life and consciousness.

It’s time to end the erasure of mentally ill experience.




Sara Adams is a journalist, photographer, and activist living in the Midwest.

5 thoughts on “Ending the Erasure of Mentally Ill Experience

  1. “Mental illness has been, and without a doubt will remain, the defining experience of my life.” Yeah, I hear ya. It’s astounding how many people are walking around half-dead, thanks to a mental illness. I’m so sick of it!

  2. Pingback: Wednesday Links Round-Up « ShoutOut! JMU

  3. Thank you, this post was extremely important to me. I hope the reality of living as mentaly ill can appear more often with honesty and respect, we need this.

  4. This post is brilliant. I don’t have anything productive to say, but I couldn’t read this post without leaving a comment on how much I loved it.

  5. Thank you for your post. Having suffered mentall illness and the stigma all my life; it is refreshing to see a well written article about change.

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