“Get Loud”? Get Real.

This is Mental Health Week in Canada. The slogans tell me I’m supposed to “Get Loud” for mental health. Problem is, I’ve been getting loud for years now, and I’m exhausted. I’ve done TV and radio interviews. I’ve spoken at national conferences. I’ve blogged. I’ve written articles. Writing is an essential function for me, little different from breathing or blinking. I need to do it, and to share it. Being a mental health advocate, on the other hand, does not come as easily. Whereas writing is invigorating, advocating for better mental health services and understanding is depleting. And I’ve gotten so little back, in return.

What has Getting Loud gotten me? It’s gotten me judgement. Isolation. Pity. What has it not gotten? System change, and a decrease in stigma.

I have PTSD as a result of being sexually assaulted when I was 20. I was only officially diagnosed this past year. For almost three decades, I’ve lived with anxiety, depression, intrusive thoughts, fear, self-loathing, an eating disorder, and an inability to trust myself or others. I’ve made poor decisions, and tried on and discarded jobs, friends, and relationships in an attempt to be someone (anyone) other than who I am. No mental health or medical professional ever attempted to connect all the dots. I was left to conclude that I was simply flawed; a peculiar collection of undesirable ailments packaged into a small, unlikable and unstable person. Getting the PTSD diagnosis and proper treatment has been like being reborn. There is a long recovery journey ahead of me, but everything feels new and promising. I mourn the decades I’ve lost.

Finding a mental health provider who understood sexual violence and PTSD should not have taken 29 years. I know it’s not just a function of my age or the era, either. Halifax has a fabulous sexual assault centre, but it recently had to close its waiting list for counselling services. Demand is simply too high. Like me, other women are going to have to lose years of their lives to the aftermath of trauma. They, too, will experience providers who pass judgement, or who suggest they should just ‘get over it’ because it’s in the past. People they considered friends will turn away, uncomfortable with the pain and subject matter. Family will tell them it’s better to keep these things quiet and not make a fuss.

How are these women supposed to “Get Loud” when they are silenced?

I also have a child with mental health and neurological issues. I have spent almost 10 years advocating on his behalf. What does “Getting Loud” for a child with mental health issues look like? It means hours of research about conditions, treatments, and possible outcomes. It means months of sifting through policies and academic articles in order to make a case that he deserves funding for special education. It means being on call 24/7 to be his personal counsellor and to do crisis intervention when he wants to self-harm (seriously, this is the most use I’ve ever gotten out of my MSW). It means explaining to teachers, other parents, and even our own family members, that this isn’t something that will just go away. “Getting Loud” means resigning yourself to the fact that this is your reality, likely forever. “Getting Loud” means knowing that teachers and other parents see you as ‘THAT mother”…the one who is always kicking up a fuss about what her disruptive, odd child needs. It means that not only is your child pushed aside and isolated….you are, too.

“Getting Loud” for a child with mental health issues is a full-time job, with no support. I know it’s taken a toll on my own mental health issues and financial resources, but not one of his mental health professionals have ever asked how the rest of the family is coping with having a child who is often in crisis. We’re simply expected to do it. And to keep on doing it, ad infinitum.

How are parents supposed to “Get Loud”, when they’ve been screaming so long their voices are giving out?

I know the idea behind the slogan “Get Loud” is that we, as a society, need to talk about mental health. The reality is, those of us who talk about it — who live it, every damn day — aren’t being heard. The message many of us read behind “Get Loud” or “Let’s Talk” is that if you’ve never ‘come out’ about your mental illness before, you should tell your story. We’ll applaud you, and pat ourselves on the back for being so supportive!

(But if you’ve been talking or getting loud for years, could you please tone it down? We don’t need you to *keep* talking. It makes us uncomfortable. Are you okay?)

I haven’t posted in my blog for months now, because of the comments I was receiving about my mental health posts. For every person who said they understood what I was writing about, there were so many more who suggested I was being difficult. They said I couldn’t possibly expect the system to change in a timely way. They pointed out that everyone has struggles, and that I am just whining. They told me that this is just part of parenting, and to deal with it. Some said I really should just keep these things to myself.

So which one is it? Get Loud? Let’s Talk? Or Let’s Keep Things Quiet and Not Make a Fuss?

It’s been almost nine years since I first started working with an amazing group of community members and health professionals to create Nova Scotia’s first mental health and addictions strategy. We held consultations with thousands of Nova Scotians to get their input and ideas. We encouraged people to “Get Loud”. The strategy that we created wasn’t perfect, but it was more than this province had ever had before, and I was so proud to have been part of its creation. Sadly, it’s more than we’ve had in quite a while. When the Liberals were elected in 2013, the mental health and addictions strategy was quietly pushed into the corner, and hasn’t been replaced or updated.

How are Nova Scotians supposed to keep getting loud when nothing ever seems to change in the way our mental health services are funded, delivered, and valued?

So please, stop asking those of us with mental illness to Get Loud. We’ve been loud for years. Maybe you just need to Start Listening, and Start Acting.

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If you give a Mom a popsicle…

When Daisy was a toddler, we had a fluffy calico cat named Scarlett O’Hairy. Daisy adored her and wanted to be just like her. She’d sleep like a cat, all curled up with Scarlett in a patch of sun on the floor. She tried eating like a cat (but even her love for Scarlett couldn’t convince her to take more than one bite of the foul-smelling food). Once, in the wee hours of the morning, Daisy saw Scarlett jump off my bed and decided to do the same thing. While Scarlett landed gracefully in the laundry basket, Daisy fell into the dresser and split her forehead on a sharp corner. This resulted in a trip to the pediatric emergency room, and four stitches. Another time, Daisy took up Scarlett’s favourite pastime – digging in the houseplants. She ripped leaves off the plants for Scarlett to eat and crammed mouthfuls of potting soil into her own mouth. This resulted in a call to poison control, and a decision that maybe a baby brother or sister would be a safer companion than a cat.

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Scarlett O’Hairy: on Wednesdays she wore pink.

 

We’ve spent a lot of time in the emergency room over the years, for cat-induced and other ailments: ear infections, kidney infections, strep throat, croup, broken bones.  Eventually, toddlers pass out of the Walking Germ Bag phase. Trips to the emergency room become so infrequent that the kids actually look back on them fondly: misty watercolored memories of being safe and warm, wearing brightly coloured johnny-shirts and wrapped in warm flannel blankets, and being treated by kind people who gave them popsicles and stickers and cool-looking bandages. 

My memories of those visits are equally nostalgic. Maybe that sounds strange – I mean, what parent looks fondly back at illnesses and middle-of-the-night trips to the ER? But like my kids, I don’t remember the illnesses much. I’ve thankfully forgotten the vomiting, the search for clean sheets in the middle of the night, trips to the hospital through dark streets with time standing still. What I do remember is how we were all treated. My kids were treated with compassion and kindness. I was also treated so well. Everything was well-explained, follow-up instructions and appointments were clear, and the health professionals seemed as concerned with how I was coping as with how my kids were managing. Once or twice, I even got a popsicle of my own.

I’m nostalgic for that, because these days my visits to the ER are for Puck’s mental health crises — something that can’t be treated with stitches or antibiotics, and is a genuinely terrifying kind of pain. And when we get past this, my experience with the mental health emergency room is not a memory on which I’ll look back fondly.Read More »