Shedding Stigma: A Refuted Renaissance

In therapy the other day, I came to one of those profound realizations you can only come to in a dedicated therapy session: by being diagnosed with SPD, I had transitioned from a mental illness to a neurological disorder, and by default, had crossed categories from stigmatized to understood.

For 13 years, I was told that I had Panic Disorder: a psychological disorder characterized by intense anxiety and unpredictable panic attacks. It has always been terrifying, always wondering if I'd have one in the middle of a loud, bright, crowded event, embarrassing myself and those around me. Everyone I knew treated me kindly on the whole: as a woman plagued by her own unexplainable demons, and frustration arose - in both me and those around me - when I was unable to "overcome" those demons in certain situations. There were the excuses ("she came down with a cold and couldn't join us tonight"), ultimatums (seek even more help, or risk losing out), severed relationships, and strained friendships. With this title, I was stigmatized.

Stigmatism is an ugly place, filled with people who mean well, but cannot commit to true understanding. In our society, and in my own little microcosm, people with mental heath issues carry the immense burden of stigma. It's unfortunate, truly, as people with mental health issues desperately need the dedicated support and unyielding understanding of those around them. Instead, this seemingly nebulous world of "mental illness" leaves people baffled and afraid. We are, of course, often afraid of the things we cannot see, and therefore cannot understand. (AIDS calls for runs, breast cancer races for a cure, MS and childhood diabetes means fundraisers and colorful ribbons, but who champions the mentally ill, the illness hidden inside?)

My therapist told me of a psychological study, where "normal" individuals were instructed to check into a mental hospital, claiming many symptoms of schizophrenia. All individuals were swiftly given diagnoses based on their claims, and many spent up to three months being institutionalized before they could convince the doctors to some degree that they were actually mentally-sound. When in the institution, the other patients were hyper-aware of the fact that these participants were not "one of them," even though the doctors refused to believe this was the case. Once finally released, they carried around a permanent diagnosis of their supposed "remission."

I spent nearly a decade and a half carrying around the title, the guilt, and the assumptions; three weeks ago, purely by changing the name of my "issues," I was able to shed the stigma (unfortunately guilt is a burden that takes a longer time to unsaddle). Suddenly, my diagnosis is neurological-based, and now the blame has shifted from the less-than-able individual to the miswired brain.

It's been a strange transition. My first reaction was of joy for a myriad of reasons: I'm not alone, I can improve significantly, I am understood by a unique group of SPD individuals. Suddenly there are awareness bracelets, t-shirts, magazines, special doctors, weighted blankets, sound machines - October is even Sensory Awareness Month. Loved ones are flocking to my side in a way I've never witnessed before. It's a double-bonus: it's no longer my fault, and it's got an apparent fan-base.

My second reaction has been of anger and disappointment, seemingly screaming out from my own self at 14 when I was diagnosed with Panic Disorder. She keeps saying, over and over to me, "our symptoms have remained the same, it was only our diagnosis that changed, so why was I misunderstood and why do you reap the benefits?"

If I haven't changed, then why this renaissance? More importantly, why didn't 14-year-old-me deserve this renaissance, this outpouring of love and support from all directions? (She too felt the same anxieties, she too startled easy, she too struggled to fall asleep.) Why, after 13 years of multiple therapies, disappointment, isolation, the daily fight against the Loud, Anxiety-Provoking World does the changing of a single title change everything?


  1. Brings an interesting twist to the saying "out of sight, out of mind". Thankfully, you can tell your 14 year old self that your suffering was for the betterment of future generations in that it inspired you to pursue your current career path (and not to mention this blog, which will give a voice to all those who have also suffered).

  2. This stimagtism is felt in the world of insurance as well. As a "mental illness", insurance will give very little in return for expenses, therapy sessions, etc. As a neurological one, it will fall more within the "norm" of illness and most probably be recognized by the insurance companies. Who ever said life is fair?


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