Books and Halifax-based resources for families of people diagnosed with mental illness

Since I wrote about mental illness awareness campaigns for The Globe and Mail, quite a few people have contacted me to ask about resources.

(This post covers resources dealing with psychosis, because they are the ones I am familiar with. I don’t know much about support for mood and eating disorders, or other mental illnesses yet.)

Nearly four years ago, I knew essentially nothing about psychosis. And finding resources wasn’t easy. It’s not that they are hidden—but there are many different groups, and they all have a slightly different focus, and there was no central location to find out about them. When you have a family member experiencing psychosis it tends to throw your world into turmoil and you don’t always have the time, focus, or ability to find out what’s out there.

So I thought it might be helpful to list a few resources for family members: a couple of books and some groups here in Halifax, where I live.

Before getting to them though, I want to point out that recovery can be a long and slow process. (It doesn’t have to be, but it can be.) If you’re the family member of a young person recovering from psychosis, patience is really important. People can remain part of the Nova Scotia Early Psychosis Program—an outpatient clinic—for five years, because, as one staff member told me, “Sometimes we don’t see real change until the fourth year.”

Brains are complicated and they need time to recover. One psychiatrist said to me, "People complain that there is nothing to do on the psych ward, but they don't realize boredom is part of the treatment." (If you are on the psych ward and bored this may be cold comfort, mind you.) So if your family member’s recovery seems slow to you, remember to practice patience.

Resources:

The Nova Scotia Early Psychosis Program is a leader in care for young people. It serves people who meet the following criteria:

  • Between the ages of 15-35

  • Experiencing a first episode of psychosis

  • Have been treated for less than 6 months with an anti-psychotic medication

  • Have had active, untreated psychosis for less than one year at the time of referral

The program's website, including contact information, is here.

Educating families is an important part of the NSEPP’s mission, because well-informed family members are better able to support their loved ones and help them in their recovery.

Early Psychosis also offers a very informative family education day once or twice a year (this is a good one for siblings to attend) and also offers a monthly support group for family of people in the program. Contact them for information on all of these.

If you want to read my article about our family’s experience with the Nova Scotia EPP you can find it here.

Laing House not only offers excellent programming and activities for young people diagnosed with mental illness, it also runs a really helpful monthly support group open to anyone. Both this and the NSEPP group usually have a speaker followed by open discussion. The Laing group runs the first Monday of every month. Info on family support at Laing House is here.

Despite its name, the Schizophrenia Society of Nova Scotia serves a range of people, not only those with a diagnosis of schizophrenia. The group runs programs for people with lived experience, including a weekly support group called From Recovery to Discovery, and a group for people who hear voices. It also runs family education and support programs, and hosts an annual conference in fall. The conference is usually priced very reasonably so families can attend, and includes lectures and panels on a range of topics. I’ve been once and found it helpful. Contact SSNS for more details.

Once a year, Dalhousie hosts the W.O. McCormick Academic Day conference. Although the name makes it sound like it’s just for academics, Academic Day is open to all. Each year’s conference has a theme. Last year’s was—not surprisingly—on cannabis and psychosis. The event is not designed specifically for family members, but you can pick up a lot of useful information.

The 2019 Academic Day is on May 10. Tickets are not yet available, but keep an eye on the website, because they go fast. The event is free, but space is limited.

Finally, I’d like to recommend a couple of books. If you are in Halifax, they are both available at the library (see the links below). They are also easy to find if you want to buy them.

Writer Ann Douglas may be best known for her books on pregnancy and babies, but she is also the author of Parenting Through the Storm, a book about parenting children diagnosed with a mental illness. While she is writing mostly for parents of kids in elementary and high school, I still found the book really helpful—especially her discussion of how to understand recovery.

Another incredibly useful book is I Am Not Sick, I Don't Need Help by Dr. Xavier Amador—a psycholoist who has worked with people with psychosis and whose brother had schizophrenia. Amador shows how to stop arguing with family members over whether or not they are sick or need medication, and how to have better, more productive conversations. I know several people who have used this book effectively, and I’ve gone back to it many times. I want to be clear that Amador is not suggesting any kind of subterfuge or underhanded ways of getting your family member to see things your way. Instead, he proposes a model for conversation he calls LEAP: Listen, Empathize, Agree (even if this means agreeing to disagree), and Partner.

Support is important for people who have experienced psychosis and for those around them. I hope you find the help you need.

"An almost schizophrenic nature"

This morning, I turned on The Current on CBC Radio to hear guest Peter MacKay, the former Canadian Minister of Foreign Affairs, talking about Donald Trump's post-G7 attacks on Justin Trudeau. MacKay made some good points about Canada-US relations, and included some context on past enmity between presidents and prime ministers. I was impressed.

Then, asked to explain Trump's behaviour, MacKay said this:

I don't think there is any explaining it. This is a product of his combative personality. He prides himself on driving a hard bargain... This is not something you can analyze and come up with any clear answer. There seems to be an almost schizophrenic nature when it comes to what he says one minute and what he says the next.

There was no negative intention behind that turn of phrase. It just slid out naturally. Just like comedian Gad Elmaleh probably meant no harm during the stand-up bit in his Netflix special when he made a joke about being able to get multiple reference signatures from a relative because he has schizophrenia.

But hearing that sentence from Peter MacKay, I felt deflated. Discouraged. It is (or should have been) common knowledge for decades that people with schizophrenia don't have multiple personalities. And calling atrocious behaviour by the President of the United States -- or anyone else "schizophrenic" is not helpful. (As an aside, if you want to feel even more deflated do an image search for "schizophrenia." It's not pretty.)

I am writing a hybrid memoir (part memoir, part literary journalism) about family and mental illness, and one of the things I've thought about is whether there is any other illness that carries as much of a burden as schizophrenia. I know very few people who openly talk about having schizophrenia. Some hide their mental illness altogether, for fear of the consequences of friends or co-workers finding out about it. Some use "psychosis" as a more general term to describe their diagnosis. Strictly speaking, psychosis represents a set of symptoms, not a disorder in itself, but it has come to be used as a blanket term covering some forms of schizophrenia and other psychotic disorders. Some have talked publicly about their diagnosis, but then went back into the closet because of the treatment they received. 

I have heard of psychiatrists who sidestep the issue of diagnosis altogether, especially in the early months of treatment, because it's not relevant to their patients' recovery. And when they do use the word "schizophrenia" it can have a negative impact on their patients. It's a heavy word. Loaded. An incurable illness. For many years, even medical professionals had very little hope people with schizophrenia could lead happy, fulfilling lives.. 

That's changed, now that we have a new understanding of schizophrenia, new medications for treatment, and an understanding of how crucial early intervention and relapse prevention can be. 

But much of society still has to catch up.

In Japan, psychiatrists no longer use schizophrenia as a diagnosis. Instead, they call it "Togo Shitcho Sho" or "integration disorder,." This paper outlines reasons for the change, but notes that one of the most important was

 the deep-rooted negative image of schizophrenia, in part related to the long-term inhumane treatment of most people with the disorder in the past.

Since the change, back in 2002, 

86% of [psychiatrists] found the new term easier to inform patients of the diagnosis as well as to explain the concept of the disorder. Eighty-two percent of them found the new term more suitable to obtain consent to treatment from patients, useful to improve treatment compliance, effective to reduce stigma, and promising for achievement of social integration.

That's the power of changing a word - and it points to why we need to stop tossing out "schizophrenic" to make jokes or to casually describe unstable behaviour.

If you want to learn more, the American Psychiatric Association has a good, concise explanation of schizophrenia here.

Madness and Pride

Sign at the 2017 Halifax Mad Hatter Tea Party

Sign at the 2017 Halifax Mad Hatter Tea Party

I have a feature in the April 2017 issue of Halifax Magazine on the nascent Mad Pride movement in Halifax. You can read it here

 As you can imagine, the label of "mental illness" is a complicated one. I have known people for whom a diagnosis of mental illness comes as a relief -- finally, they have a framework that helps them understand themselves and their experiences. Other people may reject that label altogether. And some embrace it.

In my Halifax Magazine story on the Mad Hatter Tea Party, I have a few quotes from Anna Quon, who describes herself as a "mixed-race middle-aged Mad Woman." She is the author of several novels and books of poetry, and also creates beautiful visual art. (She often donates the proceeds from her artwork to the Schizophrenia Society of Nova Scotia.)

She told me:

"Originally I had a lot of internalized stigma -- self-stigma -- and I didn’t want to talk about the fact that I'd been hospitalized and had problems with depression and some psychosis. And I didn’t want my dad to tell people who he thought might help me because they’d been through a similar situation. Even though I came from a family that was supportive, I had internalized stigma just by growing up in this world that has so much stigma about mental health.
"It was a personal journey to actually acknowledge who I am. I don’t have to hide it or pretend do be “normal” or pretend to be something that I’m not. I feel comfortable with it so I’m willing to be out there about being mad to a certain extent."

Think about the standard recovery narrative: your life falls apart, you are hospitalized, get diagnosed, get treatment, then start getting better. There are a few setbacks along the way, but eventually you are able to carry on with your life in a healthy, satisfying way.

Many people's lives line up with this narrative. But many don't. And while some people reject the notion of mental illness, others embrace it as a fundamental part of who they are.

Anna said she wouldn't have a career without her mental illness. After being hospitalized, and unable to find work, she started writing for the Dartmouth-based Ability Network. Then, she got a Canada Council grant "to do a memoir of madness in poetry -- so some of my art and work came about because of my mental health challenges." Not in spite of them.

Last summer, a family member asked if my partner and I wanted to go with him to the Mad Hatter Tea Party on the Halifax Common. It was an event organized by the Schizophrenia Society of Nova Scotia, and was inspired by the global Mad Pride movement. I had no idea what to expect. I certainly didn't think I'd be writing about it. I was just planning to enjoy a sunny afternoon on the Common.

The most striking thing about the Mad Hatter Tea Party is that it was FUN. Sure, there was a broader political purpose, but it was also just flat-out fun: crazy (yes, crazy) hat-making,  gentle yoga classes, music, food, face-painting, and a general atmosphere of celebration. "Are you here to cover this?" Anna asked, when she saw me there. (We had previously met a couple of times.)  "No," I said. "I'm just here for the event." 

Of course, I did wind up writing about it -- and about the underpinnings of mad pride, and why it has taken so long to come to Halifax. There's another tea party planned for next summer, and I'm hoping I'll be able to be there again.

 

Mental health and workers

I spent part of the last couple of months writing material for Mental Health at Work a new website launched by the Canadian Labour Congress. It has general information about mental health, talks about how to get help if you or a loved one needs it, and has more specific information on accommodating employees with mental illness and getting help at work. There are also sections on what we should be lobbying for to make mental health-care better.

I'm proud of the work I did on this site, and I'm happy the CLC is recognizing the importance of mental health for workers. Most mental illness is episodic and easily accommodated. Most people with mental illness can work productively in satisfying jobs. The right kinds of support should not be too much to ask for.

Coming Soon...

I'm not much for blogging. If you want to keep up day-to-day, please follow me on Twitter @PhilMoscovitch.

That said, I will likely post here about what I've got in the pipeline here.