Stigma of Invisible Disability

Stigma & Invisible Disability
Those of us living with invisible disabilities face stigma not only from others but sometimes from ourselves.

Recently read Work Ethic, a post by bpnurse, in which she discusses her life since she stopped working and went on Social Security Disability Insurance (SSDI).

People judge those of us with invisible disabilities. We even judge ourselves.

Someone once asked me if I questioned the ethics of receiving disability. I explained that my disability wasn’t visible. I ran down my history of hypomanic workaholism and subsequent crashing into depression, rapid cycling and mixed states which lead to my hospitalization.

Although I appear fine, traditional work and I do not mix well. My bipolar type II is well-controlled with medication and my careful avoidance of triggers to mood cycling.

Because my brain disorder is invisible and because my husband provides for our family, someone believe that I take advantage of a government program I do not need.

You see, I receive SSDI, which is based on my payment into Social Security taxes from past income combined with my current inability to work. I do not receive SSI, which is based on need (lack of resources).

Still, with this understanding, even I have felt guilty about being on disability (SSDI), about not being “productive.”

One of my psychologists (I’ve been in therapy since I was 18, so I’ve seen many psychotherapists over the decades) suggested I reframe being on disability (SSDI) as a long-term sabbatical. Reframing enabled me to accept my changed life circumstances.

Since then, I’ve further reframed my experience as God making me stay home to care for my high needs son (a migraineur who has struggled with co-occurring anxiety, depression, and health issues).

Of course, I don’t receive disability to be a stay-at-home mom. But, I didn’t want to be a stay-at-home mom. So, I’ve chosen to reframe my experience this way. I had to be broken to leave my ambitions behind, to accept a new lifestyle, to reprioritize my life.

Now, I do other work — I volunteer my writing, my time, and my knowledge and experience — while on my extended sabbatical from my former work.

What I can do, I do, and I do it well. No longer expect myself to work as I once did. It wasn’t good for me or for my family.

Why I Keep Away from Madness, Dyane Leshin-Harwod #MarchMadness

I love this post written by my dear friend Dyane Leshin-Harwood of Birth of a New Brain: Healing from Postpartum Bipolar Disorder for STIGMAMA.com. She eloquently and powerfully explains how she takes care of herself, how she pays attention to what feeds and nurtures her, and how she protects herself. She is my role model in self-care, in setting limits, in being careful what I read, what I listen to, and what I expose myself to. Thank you, Dyane.

May hospitals become more nurturing, healing environments, places where we feel supported. My experience with psychiatric hospitalization was so different from Dyane Leshin-Harwood’s, and unfortunately the superb program I enjoyed a decade ago no longer exists. That experience traumatized my husband by leaving him in the dark. He and my son visited me daily, but my psychiatric team failed to communicate with him about my treatment even though I signed the HIPAA privacy waiver. My husband feared that I would be permanently institutionalized, and his fears about my prognosis were not allayed until I was released. That my husband had to live with that anxiety for two weeks, including over Valentine’s Day, is tragic.


Why I Keep Away from Madness by Dyane Leshin-Harwood

Dyane Harwood & her Muse Lucy
Dyane Harwood & her Muse Lucy

In the past I considered “madness” to be a fascinating topic. I never shied away from facing it through books, movies, or art until I was diagnosed with postpartum onset bipolar one disorder (PPBD) at age thirty-seven.

My PPBD manifested as hypomania immediately following the birth of my second daughter. As the weeks flew by, I became more and more manic. I even became hypergraphic, a little-known, bizarre condition in which one writes compulsively. I wrote hundreds of pages in less than a week, often while tandem breastfeeding my newborn and toddler.

Something was clearly wrong.

Six weeks postpartum, I voluntarily hospitalized myself in our local behavioral health unit for treatment. I used to live one block away from the distinctive redwood building. Every day while I drove to work at a non-profit, I glanced at the “B.H.U.”, never imagining that one day I’d be locked inside there.

I had been in locked-down mental health units before, but as a visitor. My father, a professional violinist, had manic depression like so many of his brilliant colleagues. I visited my Dad at UCLA’s renowned Neuropsychiatric Institute. As soon as I got my driver’s license at sixteen, I drove alone to visit him during one of his numerous hospitalizations. I brought his Stradivarius violin and his favorite Wrigley’s spearmint gum to cheer him up. How naïve I was back then – I didn’t realize that neither item was allowed in such a place, especially the million-dollar violin! When I left his unit, I felt like I had just gotten out of jail. I felt so guilty to see him that depressed. As I watched him shuffle away in an ugly hospital gown instead of the elegant black suit he wore for his Los Angeles Philharmonic concerts, I never thought I’d be a patient in such a hellhole.

When my turn arrived to be a mentally ill patient, I had to walk away from my six-week-old baby and my toddler into a sterile unit. That was my first hospitalization among the “mad”, and I wish with all my heart it had been my last.

During my six subsequent mental hospitalizations, I was stigmatized by some of my own family, friends, and by a variety of hospital staff. It was crystal-clear that I was regarded as “mad” and nothing else.

When I was housed among the “mad” I lived with many different kinds and degrees of madness. I have PTSD from my time spent in those locked-downwards. As a result, I’ve experienced enough madness to last the rest of my life.

I hold a Bachelors of Arts degree in English and American Literature from the University of California, Santa Cruz. I’ve been an avid reader since a young child. Since my PPBD diagnosis, I’ve read many bipolar memoirs and bipolar-themed blogs that have become ubiquitous, but I’ve become much more cautious with what I read when it comes to bipolar disorder. Nowadays, I automatically avoid anything with the title “mad” or “madness” in it. I refuse to read all accounts of mental hospitalizations. I may seem like I’m burying my head in the sand – and yes, I might be missing out on a gem of a read, but I can no longer immerse myself in the world of the insane.

I first went mad when I wanted to hang myself with my thick bathrobe belt hours after I took one amitriptyline (Elavil) pill. Even in my darkest moments, I had never wanted to hang myself before I took that medication. It was obvious that the amitriptyline was causing the suicidal ideation in my brain, and – thank God – my husband was home.

“I need to get to the hospital,” I told him, unable to look into his eyes. Once again he took me to the behavioral health unit with our baby and toddler in tow. I entered the ward as a ghost of my former exuberant self.

Losing myself that way – losing my will to live and wanting to take my life using a method that had formerly been anathema to me – traumatized me. I don’t want to read about others’ experiences in insane asylums. Because I’ve spent weeks in mental hospitals and I have PTSD as a result, I don’t want another glimpse into those environments. I understand why others wish to learn about people’s experiences with madness, but I’ll refrain from examining those mental states as much as I can.

As I continue to keep away from creative works that focus upon madness, I feel empowered. I value the freedom I have to make this decision, as for far too long I felt powerless when it came to my own sanity.

I’ve been mad for long enough. Thanks to the help of medication, a good psychiatrist, therapist and self-care, I’m able to stay sane. Avoidingthe world of madness helps keep me that way.