The Last Taboo – Mental Illness, thy name is Stigma

TW: Discussion of mental health disorders, suicide ideation and a deep dive into stigma.

It seems only fitting that I link Canadian Amazon on a book about Mental Health in Canada. And so, let me introduce you to The Last Taboo by Scott Simmie and Julia Nunes. Written in 2001, it might seem outdated and of course, some of the numbers are. However, the premise of the book, told from the perspective of a person who has suffered from mental illness (Simmie) and his partner who lived with him (Nunes) it is just as relevant today.

Simmie and Nunes share their stories and ask you to consider yours, as we travel the crowded road with the millions of other Canadians who struggle and suffer with mental illness.

Confession: This is a book I almost didn’t write about because I got stuck. I read nearly all of it but truthfully, I skipped and skimmed over a bunch that got too… heavy.

There’s an excellent Appendix and Glossary filled with all sorts of information and resources at the back. However, that’s only 10 or so pages out of nearly 350.

The rest is well-written and compelling… but also heavy… both emotionally and research-ally? I know, not a real word. The heavy-duty research makes sense, though, when you realize that Simmie was given a year to explore mental health reform as a recipient of the Atkinson Fellowship of Public Policy. This wasn’t a frivolous project. It was expected to have – and has – a lot of meat on the research-bone.

What prompted me to buy the book in the first place was that when I opened it, I had unintentionally plopped myself right in the middle of a chapter on stigma. This is very, very important to me, as a mom who has struggled with mental illness in my children and also myself.

It is probably no surprise then that I read through the chapter on stigma first and thoroughly. Let me share a letter that broke my heart and also took me right back to the 1990s, during the struggle with my son and oldest daughter, in particular.

I was not a single mother until the 18 months before I moved to Canada, although it often felt like it. My children’s father (my late first husband) was deep in denial when it came to the disabilities of our children. Even when our son tried to hang himself at 8-years-old (nearly a decade before I moved) he simply closed down and let me handle it. I know it’s not abnormal for some parents to be in denial but it sure didn’t help me!

I was deeply entrenched in all-things physical & mental health because I worked for Disabled Student Services at a local community college. Between the full-time job there and the hours (upon hours) of trying to find the right diagnoses, prescriptions, schooling and accommodations for my children, not to mention trying to find out what was wrong with me, I was beat to a pulp emotionally.

Cutting a very long story short, it took YEARS to get anywhere near CLOSE to what they needed, especially our son, who by the time I moved to Canada was being taught at home during his last years of high school, among other accommodations. It’s why I couldn’t drag him out and bring him with me. My girls had already graduated high school. The oldest with a modified program and curriculum because of her constant illnesses.

Looking back, I would have done some things differently, of course. Don’t all parents feel like that? I had pushed very hard… but not necessarily in the right places.

My son was actually, literally suicidal and not one doctor addressed it in a serious way at the time, nor asked about it later.

My daughter had myriad diseases and has only recently been (finally!) diagnosed with autoimmune issues – truly a syndrome. Depression is a natural co-morbidity. Feel sick 98% of the time? That’s more than a little depressing, wouldn’t you say?

I had some pills for my own rough days, handed out like candy. Every winter, I was depressed. Zoloft, it was. Sometimes, I got anxious. No biggie. Take a Xanax. I had the big Xanax and the small one – in case things got really bad. I lived like that for a decade, at least.

Stigma? I witnessed it, watched it play out, and lived it for many years. I watched my son suffer more than most. I could tell you a million stories spanning from grade school (having kids spit on him or crush his packed lunch under their feet) into middle-and-high school (when kids routinely told him how ugly he was, cornered him, mocked and framed him for things they did – some very serious things!) and into adulthood (when some co-workers dared him to make a list people he hated enough to kill and then called the police on him.) And don’t get me started on all the little things that led him to drive off a cliff at 28-years-old.

My answer was *always* (and this will not surprise my readers) to talk about it. I talked to educators, students, churches and local high schools. I wrote articles for the college newsletter. My son hates that I include his story, so I try not to bring it up too often and when I do, to keep the focus on me. As I’ve mentioned many times (also to him) I am as much a part of it as he is, having suffered through it with him as his mother. Being honest, when I went back to work after his crash, I called it just that: a car crash. It’s only since beginning this blog – now ten years after the attempt – that I feel it’s not so raw for any of us. I now call it a suicide attempt, as it was.

You may wonder if I talk about my own mental illness to friends, family, employers? Well, yes and no. Not that it matters. My experience has been that once I’ve opened myself up in this way – especially to employers – I’m seen as a trouble-maker they need to get rid of or delicate flower they need to get rid of.

Heck, when I said I was allergic to perfume, it took three YEARS to get my office declared a non-scented workplace. And there were fights, I’ll tell ya. And that’s physical, not mental. As open and PC as everyone says they are… uh, no.

Anyway, stigma, according to Simmie and Nunes, is as old as time. I can believe it. When I was a kid, for example, it was nothing to call someone, “Crazy!” “Nuts!” or “Psycho!” And I still hear it.

They note that news outlets often say things like, “He was known to have a mental illness” as if that explains criminal behavior. That makes me livid!

They also mention something that I’d never thought of… see what you think. Many of the medications for mental illnesses cause side-effects like tics, rocking, restlessness, and smacking of lips. These things are seen as crazy too. So, the very thing that is supposed to heal you, makes you stand out just as much as the illness did (or does). No win/win there.

Sammie adds a personal note at the end of the chapter. He says the stigma was the most agonizing aspect of his mental illness. I completely agree. He goes on to talk about how his friends stepped outside the stigma and let him be who he is, without changing how they did anything. “They still saw me,” he wrote. I love that! Isn’t that what we all want? I know my son does! Me, too!

I know I did kind-of a deep dive into this one aspect of mental illness and I hope you’ll forgive me. As you can tell, I feel passionately about stigma.

The whole book is excellent and would take 10,000 more words to describe. It’s truly PACKED with great info that has stood the test of time.

One final note: This book was written twenty years ago and still, we have a long way to go. People with mental illness are still the largest percentage of the homeless in the US & Canada.

Some sobering statistics in Canada and the USA.

And… need I remind you of people in power mocking the disabled? Why is Mockery of Disability Still a Thing?

Yep, being mentally ill is a heavy burden, made more-so by the stigma that goes with it. I wish we – as a society – would get a grip and start seeing people as… >>> sarcasm on… oh, I don’t know… people. <<< sarcasm, off.