You Have the Right to Remain Silent: Should You Tell People About Your Mental Illness?

I write about computer applications for consumers and small businesspeople, mostly accounting and tax. As a part of my job, I used to attend big technology conventions in various cities.

At one show in Las Vegas, I had just left the bathroom and was walking down one of the crowded aisles. I felt something brushing my leg and looked down to see what it was. It was my half-slip, which was hugging my ankles. I must not have pulled it up far enough in the bathroom.

I considered my options quickly, and decided to duck into the Toshiba booth. I stood behind two men who were talking, said “Excuse me,” and quickly hiked my slip up. They were too startled to be amused.

That happened in the 80s, when women wore slips more than they do now. So someone might have seen my outfit and assumed I was wearing a slip. I didn’t have to tell them. But I certainly showed them, albeit accidentally.

I was thinking about that incident when a few individuals revealed their own struggles with mental illness in response to my blog posts. I appreciated their honesty. There are so many people who still don’t have a good understanding of mental illness, or who think it’s simply a character flaw.

It doesn’t help that every time there’s a mass shooting in the United States, it’s assumed that the shooter was mentally ill. That kind of unwarranted–and sometimes untrue–publicity makes the public fear–and misunderstand–mental illness even more.

If only they’d sought help, some people say. If you’ve ever been seen by a mental health professional to try and get symptoms diagnosed and treated, you know that’s not a simple solution. Both processes, the diagnosis and the treatment, are far from exact sciences. We’re lucky if our brains are ever able to return to their “normal” states.

So it’s little wonder that mentally ill individuals are hesitant to disclose their illnesses.

When I was in a psychiatric hospital in 1987, my doctor gave me a warning one day. “Don’t talk to your friends about this,” he said. “It will scare them.”

How could I keep this from my closest friends? I was used to telling them so much about my life (too much, sometimes), and I had been absent from work for five weeks. I visited the offices of my most trusted confidantes and editors my first day back, shut their doors, and told them I’d been diagnosed paranoid schizophrenic.

To their credit, I think most of them thought that was ridiculous, which it was. I was 30 — too old for the onset of a chronic mental illness.

Also to their credit, they took it in stride. One called me at 10 that night and asked why I wasn’t at his Oscar party.  They’re still good long-distance friends.

Choosing whether to disclose a mental illness  is such an individual, complicated decision. You certainly aren’t obligated to tell a potential employer. It was easy in my case. I’d started freelancing, and my new editors didn’t have to worry about onsite personnel matters with me. My meds at the time were good enough that I was able to work just fine. Even kept working through a psychotic episode in 1999 because I didn’t know I was sick. I still work today with no interference from my illness.

That’s one of the reasons I wrote Dopamine Diary and put my real name on it. Above all, I wanted other people struggling with psychiatric disorders to see that recovery is possible. I also wanted people who hadn’t been touched by it to see the main character in a sympathetic light (some of the time, anyway).

I don’t know for a fact what friends and past employers truly think about my after-the-fact disclosure. I do know that I’ve never lost a friend or an assignment over it. I believe strongly in the right to privacy where employers and acquaintances are concerned, but I also think it doesn’t hurt for your closest friends to know.

Tell the truth, but tell it slant, Emily Dickinson wrote. I wouldn’t have been quite so candid with my friends after my hospital stint if I had it to do over.  They didn’t react as kindly as they did because they’re my friends. They’re my friends because that’s the kind of empathy and understanding they display.

 

Psychotic Triggers: The Power of One Word

I moved to North Carolina in February of 1983. Having lived all my 23 years in the Midwest, its early springtime was so welcome.

Several years ago, I was looking through an old pocket calendar from that year. I wasn’t keeping a journal in those days (which I regret), but I would scribble words and phrases in it to remind me of things I needed to do.

One entry that spring read simply, “Light.” It brought back a rush of memories from my first days in the South.

Our apartment building in Greensboro was one of many that surrounded a small pond. Next to each door was an outside light that came on as it got dark. I remember how peaceful my surroundings looked at night with the soft white lights casting a glow across the water.

I remembered that feeling the lights gave me when I came across that word in my old calendar. The notation was simply a reminder to tell the management company that our light didn’t work and we needed a new one, but it was a vivid reminder of my move to a new state and a new job and new friends. It made me happy to remember it.

Words, aromas, sounds — they can all snap us back to a different place and time, sometimes good and sometimes not. During my first psychotic episode, the wrong word–the thought of what that word meant–could send me into an unpleasant tailspin.

I really liked my third roommate in the psychiatric hospital. She had taken me under her wing when I was transferred from the “chronic” ward (a wing of the facility where most residents stayed in their rooms, and the few who ventured out were quite obviously, quite severely mentally ill — even more so than me).

One day when we were sitting on our beds talking, my roommate showed me a picture of a baby in a coffin surrounded by lots of white satin blankets. It was Mary’s niece who had died of SIDS, which was why Mary was in the hospital. It had happened 18 months earlier, but it was still causing her great anxiety and depression.

Mary got up to leave, and I looked down at my neatly-made bed. That’s funny, I thought to myself. I don’t remember leaving a clothes hanger there this morning.

Suddenly, my chest started burning and I couldn’t breathe very well because of the word.

“Hanger,” I thought. “Hang-her. Hang ME.” I thought Mary blamed me for the death of her niece and wanted me to die, too. I got up quickly and went into our bathroom, but that only made it worse. Mary had left our shower curtain open, and her purple razor was sitting on a little shelf. I thought it looked like a death chamber, inviting me in.

Somebody once said that there’s a kernel of truth in every psychotic episode. And in fact, I did believe that two of my close friends wished me harm before I got sick. But once the dopamine in my brain went out of bounds, it’s impossible to know for sure why my thoughts went the way they did.

Words had great power over me when I was psychotic. I thought everyone knew things about me and believed I was responsible for very bad things happening. I thought they conveyed this information to me through hidden meanings in their language.

Once in a while, my brain will “catch” on a sentence that someone says, and it reminds me of those two periods in my life when I was mentally ill and afraid of words.

My last psychotic episode ended 20 years ago. There but for the grace of Abilify…

For those of you who don’t know, I wrote a book about my experiences with mental illness. You can get more more information at dopaminediary.net.

 

Childhood OCD, Adult Mental Illness, and AM-Radio

I listen to AM talk radio all day and all night — WCCO-AM in Minneapolis, Minnesota. I don’t hear much at night, but a few minutes is enough to put me to sleep.

WCCO-AM was my nighttime companion when my first sign of mental illness occurred. I was nine years old. The Minneapolis Star had just published excerpts of Truman Capote’s “In Cold Blood.” Unfortunately, I read the section where the family was discovered dead.

From that night on, and for the next three years, I believe I started showing symptoms of OCD. I was obsessed with the thought that someone was going to break into our house and kill my family. The fear was with me every night, all night, whenever I was awake, which was frequently.

My mother did the best she knew how to do. She let me sleep with a fan blowing air on me and an old radio on next to me bed. It was about the size of a breadbox, painted a particularly ugly shade of yellow years before.

But I could tune it in to WCCO and hear the soothing voice of Franklin Hobbs, who did an overnight show called “Hobbs’ House.” He played music from the 40s and 50s. And he talked between songs in that comforting voice. Nothing really made me feel safe–the fear was there all the time–but Hobbs did help me get through those nights in the three years my obsessive thinking lasted.

I was always so grateful when 5:00 a.m. rolled around, and Hobbs handed the airwaves over to the wacky, legendary team of Charlie Boone and Roger Erickson. The night was over, and my family and I were alive.

Boone and Erickson occasionally had famous guests on. I’d heard that Morey Amsterdam was going to be on the next week, so I sent him a joke to read. A mouse was dancing on the lid of a peanut butter jar when one of his mouse friends asked what he was doing. “Well, it says, Twist to Open.”

I thought it was hilarious, but I never knew whether Morey shared my mirth on the air. I slept through his segment.

My OCD symptoms suddenly stopped when we moved to Central Illinois in 1968. Just gone. Poof. Different bedroom, maybe. A geographical cure. They resurfaced many years later when I was in my 20s and drinking too much. I felt trapped in my bedroom, so I slept on the floor in the living room a lot, sometimes right against the apartment door.

Again, a move to a new apartment made my symptoms go away. A few years later, I had my first psychotic episode

I read an article recently about how childhood OCD can be a precursor to mental illness later in life. Don’t know if that’s true, but I’ve experienced both.

I found an old recording of Franklin Hobbs a few years ago. His voice was nothing like I’d remembered. It was kind of tinny and fast. He was talking about sports, so maybe that accounted for the difference.I’ll always remember his speech the way it was in the early 1960s, when it gave me brief reprieves from night terrors.

I’ve lived in several places since, and never picked up that overnight radio habit again until I moved back to Minnesota 15 years ago. Now I listen to an overnight host whose politics differ from mine, and who takes a lot of calls from Midwestern insomniacs — no “music of your life,”and not a particularly soothing voice.

But it’s still comforting in a way, though I’m not afraid when I go to sleep these days. It reminds me of that long-ago voice that got me through those three years of fear.