December 3 marks the annual International Day of Persons with Disabilities, a UN Day to promote the rights and well-being of persons with disabilities.
I live with bipolar disorder, a chronic psychiatric condition characterized by extreme variations in my mood, energy, activity levels, and cognition. Despite these extremes of mood and energy, I am fairly high functioning in life and at work, where I hold a senior level knowledge-economy position. I have developed a variety of coping mechanisms, such as masking, to accompany these mood states and make me perform like I am “normal,” but many days it is an uphill battle, and I feel like I have to try twice as hard as anybody else to succeed. I have even had to change my career path and goals because of my struggle with this mood disorder.
Throughout my life, I have struggled, thinking that this was a “me problem,” that I had to change the way that I interacted with the system so that I could be successful. I ran myself ragged trying to succeed in a system that is made to be equal for everyone – a laudable goal – but was ultimately disadvantaging due to my mental illness.
Eye-opening discovery
Then I discovered the Employment Equity Act (EEA). The broad purpose of the act is to achieve equality in the workplace so that people are not denied employment opportunities or benefits because of their identity or level of ability. Moreover, the act exists to “correct the conditions of disadvantage in employment experienced by women, Aboriginal peoples, persons with disabilities and members of visible minorities.” (My emphasis).
I had always thought that a disability was, you know, like the symbol. Physical. Wheelchair ramps to allow access to buildings, or maybe even screen readers for people with low or no vision, but a mental illness? I did a deep dive into the act and found this passage:
“A person with a disability has a long term or recurring physical, mental, sensory, psychiatric or learning impairment and:
- considers themselves to be disadvantaged in employment by reason of that impairment
- believes that an employer or potential employer is likely to consider them to be disadvantaged in employment by reason of that impairment.
This definition also includes persons whose functional limitations owing to their impairment have been accommodated in their current job or workplace.”
Well, that tracks. In fact, it kind of describes my experience of the workplace to a tee. So, my mental illness qualifies me as a person with a disability? What does that actually mean?
There are a few things to unpack here:
Stigma and labels
First, there is the stigma associated with a label like “disabled.” This stigma is rooted in ableism, which is an attitude that views and treats people without disabilities as the “normal” ones and those with disabilities as somehow inferior or “other.” This stigma, which I summed up earlier as a “me problem,” (self-stigma) challenged my view of myself as a capable person and employee. It also made me worry that, if I were to self-identify as a person with a disability, managers would be hesitant to hire me based on that stigma and fear around how difficult it would be to work with me.
Disadvantage
Why would I try to overcome that self-stigma, risk the stigma of others, and choose to self-identify, and declare that I am a person with disability? Because of the disadvantage in employment that my mental health causes. Living with bipolar disorder can cause me to struggle to do my job within the “one-size fits all” system of work. The way that my brain and body functions when I am in a mood episode can limit my ability to succeed. I feel that these functional limitations caused by my mental illness disadvantage me in terms of achieving my goals at work and advancing in my career.
Not a me problem
The EEA doesn’t just stop at identifying that a barrier or disadvantage exists, however, it goes one step further: accommodation, which says, “employment equity means more than treating persons in the same way but also requires special measures and the accommodation of differences.”
Through various measures of accommodation in the workplace, I have found that I can achieve my potential and excel at my job. These accommodations are tweaks to my work environment (this could be physical, temporal, or social) and processes that help me to meet expectations. The key here is that instead of those disadvantaging barriers being a “me problem” they become a systems problem that the system needs to make space for and offer opportunities to remediate.
What accommodation can look like
The trick is identifying the functional limitations, and the changes that could help overcome those limitations. So, if a medication change is making me super groggy in the morning, perhaps a change of my work hours to a later start time is in order. If working from the office is too taxing on my energy during a depressive episode, maybe the place of work needs to change to allow for working from home. If my motivation or decision-making is reduced, more frequent and structured direction from my boss, and slightly expanded deadlines might be in order. If I am having trouble concentrating while reading complex documents, a screen reader could help.
Whatever the functional limitation, there is often an accommodation that can help me work through and balance out the disadvantage caused by my disability. Beyond that, my employer actually has a duty to accommodate, meaning that they cannot refuse a reasonable accommodation up to the point of undue hardship. The goal is to level the playing field – not confer any advantage – where equity, which differs from equality, is the aim.
Representation and changing the narrative
There is one final, very significant piece to the EEA. It aims to correct underrepresentation of members of designated groups in the workplace. That means that employers are encouraged and supported by the Act to hire and retain members of designated groups, including persons with disabilities, in an effort to balance out the systemic barriers that have prevented persons with disabilities from participating fully in the workforce.
Stigma and ableist attitudes persist in society and in the workplace, but the EEA gives me the legislative background – and the courage – to advocate for myself. It has empowered me to be assertive and forthright about the tools and conditions I need to succeed in the workplace as a person living with mental illness. Ultimately, it makes me a better employee, ensuring that I am consistently able to work to my full potential and contribute to the aims of my organization.
Further reading: Mental Health at Work — It Matters. How to Start the Conversation.
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MHCC & Series – Diabetes Canada
I’d been looking forward to my MHCC & conversation with Laura Syron, President and CEO of Diabetes Canada, since I’d marked it in the calendar this summer.
My family is no stranger to diabetes.
It’s been a low thrum in the background of my life for as long as I can remember. For my mother and my many aunts, diabetes was something accepted. We had no preconceived notions about it and I’ve spent most of my life expecting to get it.
Today, we understand that many factors likely made them more susceptible; we’re of Bajan heritage, and diabetes is more common in African, Black, and Caribbean (ABC) folks.
But I became doubly interested in speaking with Laura when I learned that she herself had been diagnosed with type 2 diabetes at age 50.
That’s when her lifelong professional commitment to health advocacy became personal.
When life imitates work
Just moments after a quick hello and introduction on our virtual call, Laura apologized. “I’m sorry, my [glucose] monitor is beeping here,” she laughed ruefully. “This is life with diabetes. You’re never off the clock.”
Just back from her quarterly diabetes check-up, Laura generously reflected on her own experience with a diabetes diagnosis and her ongoing health management. While it was eight years ago, she said she recalls it like yesterday.
“I was sitting in the doctor’s office after a routine exam, and right out of left field she told me I had diabetes.”
Laura paused and took a breath.
“It’s hard to explain how unexpected that felt. How unprepared I was. I sat there, in stunned silence, without a clue about what to do next.”
But shock and dismay weren’t the worst part for Laura.
“I was so embarrassed.”
Here, I stopped her. “Embarrassed? But why?”
And in one of the more eye-opening conversations of my professional life, Laura unraveled the complex emotions that so many feel when hit with a diagnosis where lifestyle factors – can, but don’t always – play a role.
Laura Syron, President and CEO, Diabetes Canada
Shame. Blame. Guilt.
“Maybe I’d skipped too many workouts? Had I snuck an extra donut on the weekend? Was I lazy, unmotivated?”
Laura confided she considered hiding her diagnosis, even from her husband.
“In that moment, I didn’t like myself. I thought I deserved this.”
Laura isn’t alone in her experience.
In 2023, in a first-of-its-kind national survey, Diabetes Canada engaged with nearly 2,000 people with lived experience of diabetes. Laura’s feelings were borne out across the community. In fact, shame and blame were echoed by nearly 90 per cent of people living with type 1 diabetes and almost 70 per cent of those with type 2 diabetes.
Now, she has taken up the mantle, in the hope others won’t fall into that trap.
“I want people to be empowered in a way I wasn’t. I want them to know there’s a place they can turn to get information, to seek support, and to become self-advocates.”
In addition to a wealth of existing resources, Diabetes Canada has plans to create a conversation guide for health-care providers.
“It would have made all the difference if my doctor had delivered that same news: ‘You have diabetes.’ And simply added, ‘But it’s not your fault.’”
Stigma, which casts a long shadow on so many illnesses, doesn’t spare people living with diabetes.
But, said Laura, “We’re committed to changing the conversation.”
Rewriting the narrative
Diabetes Canada is working on three fronts.
“This is a marathon, not a sprint. I look at mental health, and how you’ve powerfully shifted the conversation out of the shadows. Today, we’re seeing those efforts bear fruit – from Bell Let’s Talk, to the FACES campaign.”
This is Laura’s ambition for Diabetes Canada. That people become more engaged – whether that’s corporate Canada, workplaces, or schools.
“Because from there, you see an uptick in research dollars, volunteerism you name it.”
To kick-start this virtual cycle, the organization is striving to get ahead of misinformation, which can double the burden on people living with diabetes, as it did for Laura when she was first diagnosed.
“Not only was I facing a major, life-altering diagnosis, but I also thought I’d caused it.”
They are also working against a general apathy.
“Society can be dismissive of diabetes. Don’t get me wrong, we have life-saving treatments. Type 1 diabetes used to be fatal before the advent of insulin. But that isn’t to say that managing a complex illness isn’t a tedious, often exhausting, balancing act. We’re trying to change the attitude that it’s ‘just’ diabetes.”
And finally, stigma.
Laura dubbed the reaction as a ‘societal shrug,’ or a ‘you’ve made your bed’ indifference. But she pointed out, even if that were true, not everyone has the same opportunities that can help with prevention.
“There are social, environmental, and biological factors at play. So, we’re trying to close the compassion gap.”
But it’s not just a deficit of empathy that people with diabetes experience.
It also depletes their finances and takes a toll on mental well-being.
Dollars and sense
“The cost is huge,” emphasized Laura. “I’m talking both in terms of the societal price tag and the individual’s out-of-pocket expenses.”
In just over a decade, the financial impact of diabetes has nearly tripled, from $13 billion in 2013, to $39 billion in 2024. In 2023, according to Telus Health’s annual drug trends report, diabetes medications remained the leading drug category for private insurance claims, with a nearly 30 per cent spike in eligible claim amounts as compared with 2022.
For people living with type 2 diabetes, the yearly outlay can quickly mount to over $10,000. For those with type 1, that figure rises to $18,000, taking a major bite out of any household budget.
Diabetes Canada has an information and referral line, 1-800-BANTING, named after the father of insulin invention, esteemed Canadian researcher, Dr. Frederick Banting.
Pre-pandemic, the calls they fielded were primarily centred on providing education.
“People were calling distressed because their sugars weren’t going down, or because they needed advice on different medication options, and sometimes because they just needed a listening ear.”
But since COVID, the nature of the calls has changed.
Feeling the squeeze
Today, the most frequent callers are people experiencing financial hardship.
“It’s empty wallets. An inability to pay for meds, to cover the insurance co-pay, or even buy the healthy foods so vital to diabetes management.”
I reflected that an ounce of prevention is worth a pound of cure.
Without access to the right services, supports, and treatments, that alarming cost curve isn’t going to trend in the right direction anytime soon.
“That high cost is compounded by a feeling of overwhelm. So, some people will look at what’s involved with diabetes management, in terms of dollars, yes, but also time, energy, mental load, and decide they’d rather opt-out entirely.”
That’s where things get scary, reflected Laura.
“Blindness, amputations, kidney failure, heart disease, these can all result from unmanaged diabetes,” and she continued, “when only about 10 percent of people with diabetes are cared for by an endocrinologist, the remainder rely on family doctors.”
This is a huge problem. According to the Canadian Medical Journal, 6.5 million people in Canada do not have access to regular primary care. In short, either they don’t have a family physician at all, or if they do, they can’t get timely appointments.
Laura has a solution. “We need to expand scope of practice for pharmacists, nurse practitioners, nutritionists. These allied health professionals are so integral. We need to rethink universal health care when so many people with complex needs, like diabetes, are falling outside of it.”
An overcrowded pool
Laura told me four million people in Canada have diabetes, but she provided a powerful analogy to illustrate her point.
“Imagine there are four million people with diabetes swimming in a pool.”
Some, like Laura, are in the shallow end. Others, with more severe illness, are struggling in deeper water.
“Then,” said Laura, “there are another six million people with their feet in the pool [with pre-diabetes], and millions more walking towards it.”
Add to these startling numbers that people living with diabetes are twice as likely to experience depression, and you have a scenario that’s doubly complicated.
“There’s diabetes distress, and then there’s depression, and we’ve got to be on the lookout for both.”
Diabetes distress comes from the constant anxiety and worry that stem from unrelenting decision-making, over and above the usual daily grind.
“One thing that’s unique about diabetes is that the onus is very much on the individual to manage their blood-sugar levels, and this could include lifestyle changes, oral medications, insulin injections, a pump etc.”
But calibrating those can be a challenge.
“It’s taken me eight years to find the right dosage. I won’t get into some of the awful side effects that can present when you don’t respond well to the meds, but at Diabetes Canada, this is exactly why we’re advocating for individualized treatments.”
Metabolizing trauma
Diabetes and depression go hand-in-hand, and Laura advocates embracing best-practices like trauma-informed care, which has long been a gold-standard in mental health treatment.
“We live in these imperfect systems, and I worry that the gap between the haves and the have nots is widening. And with this lack of access comes judgement – and judgement from healthcare providers can cause great harm.”
For example, a diabetic low or high can mimic intoxication. And, given that African, Black, and Caribbean people, as well as those of Indigenous heritage, have higher rates of diabetes to begin with, a bias – even an unconscious one – can turn deadly.
The whole conversation gets me to thinking about how we process trauma in the body, and the imprint it leaves.
People with depression have a 40 to 60 per cent increased risk of developing diabetes, and those living with diabetes are two to three times more likely to experience depression.
It’s that age-old “chicken and egg” conundrum.
But regardless of the order in which one develops these conditions, the metaphorical pool Laura spoke of is growing more crowded by the day.
“Someone slips in every three minutes.”
Until we can drain the pool, the life-sustaining supports these folks need include the kind of wraparound care Laura herself is lucky enough to have.
“Everyone living with diabetes should have access to medication, eye and wound care, a family doctor, and, of course, mental health care. This should be the rule, not the exception.”
Ending diabetes
In 2021, Canada celebrated the 100th anniversary of the discovery of insulin – among our country’s greatest achievements.
“As the birthplace of insulin, Canada has a legacy to uphold,” said Laura. “Yes, millions of lives have been saved, but millions more have diabetes than ever before. We cannot wait another 100 years for a cure.”
Laura points to a range of things people can do, to mark Diabetes Awareness Month, and to help Canada lead the world toward ending diabetes.
“You can get informed and know your risks, share information to raise awareness, or even take the time to declutter before winter, and donate clothes, décor, books, or small household items.”
As we end the call, Laura checks her monitor one more time.
“Won’t it be something when there comes a day when we’ve got a cure.”
Until then, Laura will remain on the clock – at home, and at work.
Author: Debra Yearwood
A communications pro with more than 20 years of executive experience in the health sector, expertly navigating everything from social marketing to crisis comms. When she’s not advising on the boards of Health Partners or Top Sixty Over Sixty, she’s busy finishing her book on thriving in later life (because why stop now?). Certified Health Executive by day, diversity advocate and magazine contributor by night—Debra’s the one you call when things need fixing or explaining.
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Is spirituality back? Can micro-messages delivered via WhatsApp offer measurable improvements on well-being? These, and other ideas, were on the table at the 9th annual Electronic Mental Health International Collaborative (eMHIC) congress, hosted in September in Ottawa by the Mental Health Commission of Canada. Hundreds of delegates from dozens of countries came together to expand their thinking under the theme Digital Building Capacity: 24/7 Mental Health Support for All. The Catalyst team drew selected snack-sized insights and concepts for inspiration.
1. The Big Three
If you’re a young person, this likely comes as no surprise: their top three concerns are jobs, mental health, and climate. This finding from UNICEF guided the development of USupportME, an on-demand psychological support platform for youth. Piloted in several Eastern European and Central Asian countries, the platform is flexible and can be branded for use in different regions. With GDPR compliance and security support, it offers scalable white-label mental health services.
2. Ending the Google Loop of Despair
SANE, an Australian health organization for people with complex mental health issues, coined the term for a familiar cycle: being sent to a website, then a helpline, then a primary care physician, and finally referred to a psychologist—only to face a six-month wait, leading people back to “Dr. Google.” To break this cycle, SANE created a new model of psychosocial support focused on choice, continuity, open access, and quick response. Their approach includes self-referral, telehealth, digital programs, and group sessions, with an Indigenous-governed online learning space in their recovery community. They offer ongoing care, eliminating the traditional discharge model. “The future is in blended care models,” says CEO Rachel Green. It’s tech in service of people.
3. Soul Decisions
“Where did the soul go in clinical psychology?” asks Allan Donsky, a professor in the Department of Psychiatry at the University of Calgary and consultant at the Canadian Institute of Natural and Integrative Medicine (CINIM). He advocates for more contemplative therapeutic practices, beyond strictly diagnosis driven interventions, aimed at fostering self-awareness. Developing inner literacy can help people transition from languishing to flourishing by addressing big questions of self-acceptance, purpose, freedom, and relationships. Donsky notes that existential therapy was largely discarded in the 1970s, but there is a renewed interest in exploring inner dimensions—what might be called the heart, spirit, or soul. “What does it mean to be human?” he asks? It’s a universal question. “Every culture around the world has its ways of contemplating the deeper aspects of life.”
4. Family First
Mental health advocate Nicole Waldron referred to family caregivers as the very first responders. They are first on the scene to help family members, and they are often the unseen link in mental health care. Waldron gave a powerful address calling for better data collection and ecosystem support for family caregivers for their wellness, advocacy, and education. “What does a CTO mean? What does an SDM mean? How do you navigate a system where your loved one has been criminalized?”
(A CTO refers to a community treatment order and an SDM stands for substitute decision-maker).
Credit: eMHIC
5. One-Stop Help
Where to start? When there are so many options to choose from and you need support, what is the first step? Kids Help Phone launched Resources Around Me at the conference. It’s a directory of trustworthy resources from all across Canada. Kids Help Phone had 20 million interactions in 2020, and this directory helps them provide more support in more places and in more ways – virtual, text, in-person, and more.
6. Expressing Emotions in Sign Language
In Bangladesh, there are a total of 500 practitioners – 300 psychiatrists and 200 psychologists – for a population of 180 million – that’s a giant gap to fill. That’s where PhD researcher M Tasdik Hasan of Monash University in Melbourne, Australia, is piloting a project co-designed with deaf people, caregivers, healthcare providers, and sign-language interpreters. He notes deaf communities, in Bangladesh and the world over, are historically ignored when it comes to accessible and inclusive mental health solutions. They co-designed culturally and linguistically tailored tools to provide basic mental health terminology – such as PTSD, stress, and depression – in sign language.
7. Building Capacity in Small and Remote Communities
The ATIPAN Project provides telehealth services to Indigenous communities in the Western Visayas region of the Philippines, where access to healthcare is often limited by distance, challenging terrain (including islands, mountains, and agricultural or coastal areas), armed conflict, language barriers, and financial constraints. To address these challenges, the project implemented community-based patient navigators and infrastructure development over two years. Named after the Hiligaynon word atipan (“to take care of”), the project offers free consultations, training for community coordinators, and basic medications.
8. What’s App with That?
The Pode Falar project provides mental health support to Brazilians aged 13-24 through a website, Instagram, and WhatsApp. It features a chatbot named Ariel, who handles automated triage and offers assistance based on the complexity of users’ concerns. Users can access self-care tips (“I want to take care of myself”), read or share anonymous stories about overcoming challenges (“I want to be inspired”), and connect with a human agent for additional support (“I want to talk”). This large-scale initiative addresses mental health in an under-resourced area and was highlighted in a panel discussion: “Are Low to Middle Income Settings Ready to Benefit from Digital Mental Health Tools?” The program supports text, email, and WhatsApp messaging services.
Steal These Ideas
The congress’ regular sessions titled “Brag & Steal” offer permission to take projects that have worked well elsewhere and apply them to your own work. In that spirit, we want to underline a few cool concepts.
Pop Up Mental Health
Those attending a mental health conference tend to be a niche bunch, so why not bring it to the people? The Time to Change program that ran for 15 years in the UK until 2021 campaigned to reduce stigma through social contact. People with lived experiences of mental health issues had two-way conversations with unknown members of the public to debunk myths about mental illness. They went to concerts, libraries, and farmers’ markets, said Sue Baker, OBE, founder of Time to Change.
Of Sound Mind
Composer, sound artist, producer, and DJ Satya Hinduja, founder of Alchemic Sound Environment, taps into the connection between sound, music, technology, and health. Hinduja led a deep listening experience, designed to invoke states of reflection, receptivity, and exchange. Thinking about sound as a therapeutic experience gave participants a chance to reflect on the noises around them, frequencies, vibrations, and their own interiority.
North Star
There are so many mental health apps out there – how do we know what to trust? At the congress, the Mental Health Commission of Canada released Canada’s First E-Mental Health Strategy. This guiding star document has six priorities and 12 recommendations to chart the future direction and development of e-mental health in Canada. Use it to advocate, guide, and develop your work.
Narrative Care
Step by Step is a web application used in Lebanon that provides mental health support through storytelling. In the program, fictional characters with depression visit a healthcare worker, and users learn coping skills from a 15-minute illustrated story, observing how the character applies these techniques in their life. The second 15-minute segment is interactive, with the healthcare professional character delving deeper into therapeutic techniques and offering activities for users to reinforce what they’ve learned.
Overheard at eMHIC
- On getting things done: The words “collaborative action” – shortened to “collaboraction” was the name of the game – working together to advance mental health access.
- Beyond shiny objects: It’s not about technology per se, rather, “it’s about people and trust.” The tools enable this work and digital has no geopolitical boundaries.
- Making space for our work: Ian Hickie, professor of psychiatry, Brain and Mind Centre, University of Sydney, Australia, talked about “the Uberization of mental health.” If those with lived experience and research capacity in this field don’t respond appropriately, it leaves room for others to step in to respond consumer priorities: access, choice, competitive pricing, user experience. Worldwide, demand for personalized mental health services far outstrips supply.
- The meaning of it all: “We all get lifted when someone believes in us,” said eMHIC executive director, Anil Thapliyal, in his closing comments.
Coming up: The 10th annual congress takes place in Toronto, November 2025. Register your interest and learn more at: https://events.emhicglobal.com/register-your-interest-for-emhic-2025/
Further reading: Tech Support: Online mental health support is breaking down barriers.
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My conversation with Lori Radke, President and CEO of Crohn’s and Colitis Canada got real, very quickly.
Given that 2024 marks Crohn’s and Colitis Canada’s 50th anniversary, I asked Lori to reflect on that legacy. “Where have you been, and where are you going?”
“I can’t remember a time when Crohn’s and colitis wasn’t a thrum in the background of my own life,” explained Lori, an only child, whose mother was diagnosed while pregnant. “That’s over 50 years ago. And back then, there was zero information. Nothing.”
Five decades ago, despite its severity of symptoms, the disease was sloughed off by medical professionals as simply “all in your head.”
Mapping the mind-gut connection
Today, inflammatory bowel disease (IBD), of which Crohn’s and colitis are the most common forms, is understood to inflame the lining of the gastrointestinal tract. During acute flares, IBD can interrupt the digestive process from start to finish, including properly absorbing nutrients and eliminating waste. This can cause relentless diarrhea, severe cramping, and bloody stools. Treatments may stop working, and surgery is a frequent recourse.
In addition to physical symptoms, as many as a third of people living with IBD also experience anxiety and depression.
“Of course, today, we understand there is a deep mind-gut connection, and if we can successfully manage symptoms of stress through cognitive behavioural therapy, for example, we can better manage physical symptoms – but often that comes with an out-of-pocket cost. The hard truth is, we still don’t know what causes these incredibly painful and terribly inconvenient bowel diseases. And a cure isn’t yet on the horizon, though I hope we’re getting closer.”
Tech to the rescue
And it’s that gap, between where they are today, and a future cure, that Lori finds herself navigating.
“We were founded in 1974 by a group of concerned parents. Understandably, they wanted to find a cure. So, our efforts remained laser-focused on that, raising $150 million and distributing 400 grants – for research that is giving us realistic hope.”
But about six years ago, patients began urging the organization expand their mandate
“And we listened,” said Lori.
Patients affirmed that while finding a cure must be job one, improving quality of life, in the here and now, was a close second. Following those marching orders, Crohn’s and Colitis Canada quickly regrouped, zeroing in on the power of technology to open new doors – literally and figuratively.
The GoHere app is a prime example.
Conceived to serve an urgent community need – and created with the support of Amazon Web Services – it provides detailed information about publicly available washrooms in Canada with no-questions-asked access.
Retail chains, municipal buildings, government offices, and restaurants agree to be identified on the app. After downloading it, people can better plan trips and outings, or locate emergency washroom facilities nearby, without having to make a purchase or beg for admission.
It’s been downloaded 46,000 times, offering a trail of breadcrumbs to 3,450 publicly available washrooms, and counting.
Lori Radke, President and CEO, Crohn’s and Colitis Canada
Tackling the taboo
“It’s a simple idea, but it’s a huge game-changer,” explained Lori. “Having IBD isn’t like that one time when you or I had diarrhea last year. It can be utterly debilitating, and you can quickly find yourself isolated. Incontinence is still taboo. We all have bodily functions, but we have not normalized talking about them. GoHere is one way we’re trying to make a practical change – and, in doing that – change mindsets at the same time.”
In short, Crohn’s and Colitis Canada is striving to lessen the double burden of symptoms and stigma.
“We’ve created Crohn’s and Colitis Connect – a Facebook-style online platform exclusively for people living with IBD, and their caregivers – in direct response to a pressing desire for peer support among those living with the illness. It affects almost 0.9% of the population, so while it’s not uncommon, it’s rare enough that you may not know anyone who has walked a mile in your shoes.”
Which is where the Gusty Walk comes in.
Walking the talk
Held in 50 locations across the country, and racking in nearly $2.4 million, it’s both a major fundraiser, and a deeply valued community-building exercise.
“I remember this one family, and the daughter was just over the moon. She was practically glowing as she said to her dad, ‘Look! Look at the Port-o-Potties lining the route! You’re going to be able to do this!’ That kind of inclusion…we just don’t see enough of it.”
Speaking of inclusion, I asked Lori how workplaces are doing on the accommodation front, and what steps could be taken to make life easier for people who already bear the added burden of managing a complex, episodic illness – with often unpleasant and painful symptoms.
“I think there are small things employers can do, proactively. Tell people to take breaks throughout meetings should they need them. Normalize that. Offer wellness days, so people can choose to take time without having to give reasoning. But really, because gut and digestive health are not only invisible, but traditionally out of bounds for ‘polite conversation’, the only real solution is to ask for what you need. And that can be difficult.”
But Lori went on to say one of the things that brings her great joy is watching the tide slowly turn.
“Within our community, we have this brave group of influencers, like Paula Sojo, who lives with Crohn’s.”
The power of influence
Sojo underwent 15 surgeries and had an ostomy at 18. She’s turned something she says she once found repellant into a fashion statement, creating her own custom ostomy bag cover business.
“She is refusing to remain unseen, or to be silenced because her experience might make someone uncomfortable. She is standing up and saying, ‘I am beautiful, I am powerful, and above all, I am alive.’”
Because, added Lori, “As terrifying as the prospect of an ostomy can be, it can save your life.” And it’s this message, of pulling back the curtain, to better educate the public and even health-care providers, that is informing the way forward for the organization.
Life – interrupted
Awareness breeds understanding, which alchemizes into empathy. And empathy is critical for people living with Crohn’s and Colitis.
“It’s the only way we’ll create a society where the adults living with this today can speak openly and serve as role models to the overwhelming number of children who are being diagnosed and will have to navigate this journey throughout their whole lives.”
And while people are most often diagnosed before the age of 30, since 1995 the incidence of Crohn’s and colitis has doubled in kids under ten.
“It’s alarming, that’s for sure,” said Lori, who notes that in 2023, 11,000 people were diagnosed, meaning a new diagnosis every 48 minutes.
“It’s about so much more than numbers,” said Lori. “These are lives. Lives about to veer in a direction no one wanted or expected.”
Lives like a good friend of Lori’s 14-year-old daughter, who was supposed to spend the summer at camp, enjoying a carefree time with friends.
But instead of canoeing and campfires, she endured the season lying in a hospital bed, on a feeding tube, with a temporary stoma, having had 25 centimetres of her bowel resected.
After sharing this story, Lori paused, collecting herself. She glanced down at her desk and rifled through her papers.
“I prepared for this [interview], but this wasn’t in my notes. I was thinking about how when we go to see my daughter’s friend in hospital, my job is to support her mom. And if I wasn’t in this job, would I have the slightest idea how to do that? The answer is likely no. And that’s what we’re working so hard to change.”
Author: Debra Yearwood
A communications pro with more than 20 years of executive experience in the health sector, expertly navigating everything from social marketing to crisis comms. When she’s not advising on the boards of Health Partners or Top Sixty Over Sixty, she’s busy finishing her book on thriving in later life (because why stop now?). Certified Health Executive by day, diversity advocate and magazine contributor by night—Debra’s the one you call when things need fixing or explaining.
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The Book Club series profiles good reads that challenge stereotypes and stigmas – part of our Representations section on pop culture and mental health.
It’s not just gender bias – though that’s a useful umbrella term for the various societal ills, long-held beliefs, lack of data, historical hangups, and stigma that negatively impact mental health care for women.
All In Her Head
Author Misty Pratt is a science communicator and researcher based in Ottawa. She brings in medical research, interviews with practitioners, and her lived experience with mental health care into a book (Greystone Books, May 2024) that dismantles outdated concepts like hysteria, critiques the self-care industrial complex, and examines cultural constructions of mental illness.
It’s not you, it’s capitalism
In chapter 7 – titled Are You Mentally Ill or Mentally Overloaded? – Pratt underlines the link between burnout and depression, based on a study of Finnish employees. It suggests that people suffering from burnout are more likely to become depressed, while those with depression are more vulnerable to burnout.
Within this loop, Pratt notes that when women experience burnout – in a broad sense of being overly exhausted by the mental load and daily life – it is sometimes diagnosed as anxiety or depression. However, this could be a false diagnosis that overlooks larger economic and social issues – such as the patriarchy (Chapter 6) – leading to ineffective treatments.
Pratt asks readers to consider their situation more holistically. In other words, is the reason you can’t get out of bed more about the climate catastrophic world you live in, your economic situation, or a lack of power– rather than about you as a person?
Empowering eye-opener
“Personally, this realization completely changed the way I relate to myself and my mental illness,” Pratt writes. “I believe that misdiagnosing burnout feeds the illusion that mental illness is due to a personality flaw, negative mindset, my family’s genes, or an imbalance in my brain rather than an understanding that is closer to the truth: I’m facing a social problem that has real, lived emotional consequences.”
She found this realization freeing but notes it can be distressing to know you don’t have as much control over your well-being as you may have thought or been led to believe. However, a broader more fulsome view can set you “on a path to rediscover your own capacity, the ways in which you are limited, and what tiny actions of resistance you can make.”
Pratt is careful to not define what that resistance could or should look like for anyone. She checks her own biases in the book, actively avoiding what she calls the trap of “White Woman Wellness Syndrome,” that carries a privilege and often pushes simple fixes that are trendy or culturally appropriative. There are no affiliate links to jade eggs or corny affirmations to be found here. Rather, wellness culture and self-care are reimagined in a way that touches on our multitudes: spiritual, social, relational, cognitive, emotional, and financial.
Rewriting her story
Pratt shares her story of a nervous breakdown, anxiety, and depression; her strategies, sessions with therapists, and how these intersected with life stages, such as the birth of her children. She weaves in her lived experiences with trenchant analysis of contemporary research through a biopsychosocial lens (a model that looks at biological, psychological, and social factors that influence our lives).
Another through line is the story of Pratt’s grandmother, Dorothy Mavis Buckler, who was contending with bipolar disorder in the 1980s, a time when we knew much less, stigma was painfully and systemically strong, and treatments were rudimentary. Pratt recalls her view as a then-five-year-old observing her grandmother’s state.
“When we lose our mind, where does it go?” she writes. “As our mind drifts past, do we jump and try to grab at it, as a young child would chase after a wayward balloon on a windy day?”
Clinicians acted as if her grandmother’s symptoms were exaggerated. Pratt explores the narrative of hysteria and wonders what might be different now for her grandmother. Contrasted with Pratt’s own experiences and research, the reader is left with a hopeful feeling – that things have improved, even if there is so much more to do.
For example, when Pratt gets lightly “manifesto-y” toward the end, her call-to-action is so sensible and straightforward that one wonders – why aren’t we there yet?
“My wish is for all women to have access to effective biopsychosocial treatment options, to consent only once properly informed, to receive support for their preferences and values, and to have better care in coming off medication,” she writes.
“This can be done in collaboration with psychiatrists, psychologists, social workers, patient advocates, and anyone else working toward better mental health care. In other words, we can find common ground to stand on, a place where the door opens to choices for each and every individual who wants them.”
Further reading: Lifeline: An Elegy: Stephanie Kain’s novel changes the narrative on supporting someone with mental illness.
Resource: Where to Get Care – A Guide to Navigating Public and Private Mental Health Services in Canada.
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The power of optimism
When I sat down with Kimberley Hanson to talk all things HealthPartners, I was curious to understand her optimism about the future of workplace fundraising.
“Charities are being asked to do more, with less. Illnesses are on the rise, but pocketbooks are stretched. What do we do?”
Kim smiled, a knowing expression on her face. “That’s the million-dollar question. According to Statista, charitable donations were down 371.7 million dollars from 2021 to 2022.1
She went on to say, “We’re living in polarizing times. And people are feeling pessimistic about the future. This bears out in surveys, and it’s no wonder. The pandemic is still casting a long shadow. Cost of living is up. The health-care system is stretched to the breaking point. And yet, I remain an optimist.”
Kim’s glass half-full outlook comes, in large part, from the work she does to bring awareness into workplaces across the country about the irreplaceable contributions of HealthPartners’ charities.
“They fill tremendous gaps. These charities are focused on the needs of people today – education, advocacy, services, and supports – and they are committed to finding better treatments and cures for tomorrow. We will all likely need their help at some point – whether that’s due to cancer, heart and stroke, ALS, the list goes on – and we will certainly know someone who does,” said Kim.
Collateral benefits
Given the importance of these issues to people in Canada, by bringing these charities to work, employers signal that they understand and are creating an opportunity for employees to conveniently learn more and contribute to something meaningful.
By engaging volunteers, HealthPartners provides access to those with lived experience to share their personal stories. The power of their first-hand accounts is two-fold.
They bring home the profound importance of the work carried out by HealthPartners’ charities, while empowering employers to foster a culture of generosity and social responsibility.
It’s in doing this double duty where the magic happens.
“It’s an antidote to pessimism. And it’s got tremendous collateral benefits. We’re seeing participating workplaces move the needle on accommodations, as just one example. Hearing about a person’s struggle to disclose, say, arthritis or anxiety…fearing a dismissive ‘pull up your socks’ attitude, can create fresh awareness and empathy. A light bulb goes on, and employers start asking themselves: How could we improve the experience of our own employees who might be struggling?”
Rejecting the machine mindset
Kim went on to explain further.
“Employees aren’t automatons. They come to work with their whole being. And they’re largely motivated by finding meaning – not just in their tasks and responsibilities – but in being part of a social fabric that aligns with their values. In short, why I am here, beyond the paycheck? Employees who feel that their employers were highly committed to their communities were two times likelier to be satisfied with their job. Employees who participated in donating and volunteer programs at work were 2.3 times as likely to stay at their job for the next two years.2”
This is borne out in employee engagement and retention, decreased absenteeism, and higher productivity. In fact, surveys conducted by HealthPartners on the heels of workplace campaigns show upwards of 95 per cent of employees are onboard with workplace giving, and 91 per cent would do so again.3
A shared language
Given the average adult spends a third of their life at work, Kim believes workplaces can be foundational in changing mindsets and dispelling myths.
I reflected that the MHCC made normalizing mental health at work a cornerstone of our stigma-busting efforts, sharing the belief that what gets talked about around the watercooler trickles down to the dinner table.
A great example of this is MHCC’s Opening Minds workplace training, which gives employees the tools and shared language to talk openly about mental health problems and illnesses, challenges and changes negative attitudes, and ultimately, reduces stigma. Both in the workplace, and beyond.
And stigma is hardly exclusive to mental illness.
In fact, many HealthPartners’ charities have heard from their communities that tackling stigma is top of the priority list.
Kim heartily agrees. “If I could wave a magic wand to make a major change within our health-care system, it would be the eradication of stigma. It cuts across virtually all our partners. It prevents people from seeking help. It contributes to the misallocation of funds. And it seeps into the unconscious bias of health-care providers themselves, which can compound or worsen the outcomes of illnesses.”
Kim has experienced stigma’s long reach first-hand. At 20, she began losing an alarming amount of weight. Her doctor dismissed her concerns, despite the hard-evidence of a blood-glucose test pointing to diabetes. Sadly, she didn’t present as a “typical” diabetes patient, so her concerns were roundly dismissed.
“That bias cost me two years of my life,” said Kim. “But by addressing stigma and the flip side of the coin, discrimination, we can make access to care more equitable.”
The collective advantage
Kim described the knock-on effect of collective action as being the secret to advancing changes that benefit everyone more rapidly.
When she worked for Diabetes Canada, for example, Kim set her sights on a National Diabetes Framework. She was told she’d never get buy-in from other health charities, focused as they were on their own needs.
But as a patient, and an advocate, Kim rejected this failed logic.
“This is not a zero-sum game,” said Kim, who forged strong alliances across the sector in pursuit of what she knew to be a mutually beneficial goal.
“I have diabetes, so that naturally puts me at greater risk for a host of other conditions: cardiac, kidney, depression…so whatever we can do to help people better manage or ward off the development of diabetes, will naturally be good news across the health-care spectrum. And that applies to many other illnesses as well.”
To a member, each charity is looking for ways to delay or prevent the onset of illness, where possible. And, when the cause of illness remains a mystery, as it often does, no stone is being left unturned in the pursuit of greater understanding.
Given the irrefutable comorbidities that link the communities of so many HealthPartners’ charities, a ‘better together’ approach makes sense, both morally and practically.
A holistic shift
“We aren’t walking organs,” said Kim. “For far too long we’ve treated people’s symptoms in isolation. A nephrologist for kidneys. A cardiologist for heart disease. You get the idea. But when something malfunctions in a complex system, what are the chances that another element of that system might fail? High. So, we need to start treating the whole person.”
And, Kim emphasized, that includes giving people with lived experience a voice at the health-care system decision-making table.
It’s this humanistic approach that sets HealthPartners apart.
Through workplace fundraising campaigns, it recognizes that employees are complex and multi-faceted, many spurred on by a drive to make a positive difference.
And via the health charity partnerships it forges, it highlights that differences don’t preclude common ground. Ultimately, it’s this powerful collective that will create a more responsive, inclusive, equitable health-care system – for all of us.
In the absence of a magic wand, Kim will continue to roll up her sleeves in service to this work.
- https://www.statista.com/statistics/478794/total-charitable-donations-in-canada/ ↩︎
- Imagine Canada 2019, Profit, Purpose, Talent: https://imaginecanada.ca/sites/default/files/2019-11/Profit_Purpose_Talent_WEB_EN.pdf ↩︎
- To be published in HealthPartners annual report – March 2025 ↩︎
Author: Allison Cowan
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Canadians may assume that health-care workers have ready access to all the help and care required for psychological health and safety issues in the workplace.
It is not necessarily so.
That perhaps incongruous truth is the motivation for the Psychological Health and Safety Toolkit for Primary Care Teams and Training Programs — the PH&S Toolkit.
It’s a new and broad collection of adaptable tools created in partnership by the Canadian Health Workforce Network, the Mental Health Commission of Canada (MHCC), and Team Primary Care (the latter an initiative of the Foundation for Advancing Family Medicine, funded by Employment and Social Development Canada).
Karina Urdaneta, Program Manager for Prevention and Promotion Initiatives with the MHCC.
“The PH&S Toolkit is a bilingual website with more than 120 resources to support health-care leaders, HR representatives, workers, trainees, and educators enhance psychological health and safety in their working and learning environments,” says toolkit team member Karina Urdaneta, the Program Manager for Prevention and Promotion Initiatives with the MHCC.
“Psychologically healthy and safe health-care workplaces can help improve health-care workers’ well-being, decrease absenteeism and turnover, boost productivity, enhance organization’s reputations, increase patient satisfaction, reduce medical errors, and lower health-care costs.”
Strengthening the workforce
Canada has a health workforce crisis, particularly in primary care. Even before the pandemic ratcheted up the pressure, health-care workers were screening positive for stress, depression, anxiety, burnout, and risk of suicide.
Psychological health and safety, which addresses those risks, is defined in the toolkit as “the systematic support provided within an organization and within teams to actively prevent and minimize the risk of psychological harm from work-related causes and promote mental health.”
It goes to the very core of health-care operations, the authors say, “embedded in the way people interact with one another, and the way working conditions and management practices are structured within the organization or team.”
The toolkit recognizes that health care is not a monolith, and the specifics of psychological stresses and challenges vary from one sub-sector of health care to the next — the challenges for employees in a long-term care facility can differ from those in a hospital emergency room, for example, and both may differ from psychological health and safety in a research program or in health-care education.
Even within professions the pressures can be complexly varied. For example, paramedics see traumatic injuries, “the things you see that people in normal life don’t see,” says Peter, a paramedic in Halifax, who asked to be identified only by his first name.
He notes they also bear tremendous stress from elsewhere, such as working with chronic abuse of the system by people who don’t need urgent care but habitually call for ambulances, or by bureaucratic inefficiencies that help lead to backlogs and delays in delivering care.
“That kind of wears on you, because there’s not enough ambulances; there’s not enough resources to deal with this, but we have to keep going,” Peter says. “It kind of wears you down.”
Essential concepts to support the sector
These challenges are among many examples throughout the health-care sector that demonstrate why the toolkit, which is online and available for free, was made to be broad and adaptable.
It is arranged around seven key themes:
- Organizational and team culture
- Workload management and work-life balance
- Clear leadership and expectations
- Psychological protection
- Protection of physical safety
- Protection from moral distress
- Support for psychological self-care.
Users of the website can click on any category for a definition — “Protection from moral distress,” for example, includes “providing access to bioethics consultations and training, and developing policies and guidelines to address morally distressing events.”
A resources tab leads to drop-down menus that users can use to filter the 120-plus resources available to fit the specific needs of their team and organization. Users can filter for theme, format (websites, articles, workshops); along with sector, setting, identities, audience (HR, employees, managers), cost, country and language.
Teams in the workplace can use the resources directly from the website — it could be, for example, “Reflections on the Mentor-Mentee Relationship,” an article from the Journal of the Pediatric Infectious Diseases Society, or “Resources for Team Building,” a workshop of materials and tools to help “create an action plan with your team to improve psychological health and safety.” The resources and other videos, articles, webinars and more have been compiled from dozens of sources to ensure the toolbox is stocked with high-quality, evidence-informed tools.
How it’s being used
Workplace teams have even incorporated elements of the toolkit into their own existing psychological health and safety programs.
“We developed a curriculum for nurse practitioners who will be delivering primary care in long-term care settings, and the psychological health and safety component was an actual piece of our final module,” says Ontario nurse practitioner Carrie Heer.
“A number of team members from the psychological health and safety group, their team, actually put that piece together for us. We wove it in there.”
The curriculum can be used by nurse practitioners across Canada or elsewhere and is also available for use in education settings.
Michelle Acorn, the CEO of the Nurse Practitioners Association of Ontario, says that “emphasizing mental health from the outset,” ensures that nurse practitioners are not only equipped with the skills to support residents, but also with support and self-care strategies that are needed to thrive in our challenging environments, which ultimately enhances both our professional performance and overall job satisfaction.
This improves outcomes for residents of long-term care centres, Acorn says. “It’s a critical step towards building a more resilient and effective healthcare workforce.”
To aid facilitators in doing no harm while attempting to do good, the Equity in Health Systems Lab at Bruyère Research Institute have created a suite of equity, diversity, inclusivity, and accessibility tools as an additional resource that is useful in this work.
They are succinct, introductory tools to help educators, teachers and facilitators as they develop and facilitate educational activities. Guiding questions help to mitigate harm, the authors say.
They focus on three R’s: representation, roles/relationships, and responsibilities – essential tenets because of the “real risk of either perpetuating or even creating harm through the sharing of stereotypes, stigma, bias, micro-aggressions, and more.” These can be inadvertently transmitted through cases, stories, videos, and other forms of prompts in education activities, if the resources are not considered through an equity framework.
Thus, integrating these frameworks into health-care professionals’ learning activities is a significant stride towards promoting fairness and reducing harm within educational settings. It can improve the quality of work and life for employees throughout the health-care sector and improve outcomes for their patients.
Further reading: A free course on dismantling structural stigma in health care aims for meaningful change for people experiencing mental health and substance use issues.
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When Kristen Parks delved into the Mental Health Structural Stigma in Health Care eLearning Course this past summer, she soon had a distinct feeling of déjà vu.
It didn’t take long for her to realize, though, that some of the material was familiar because she’d seen it before. More than ten years ago, when she was in nursing school, she took an entire course on mental health.
“It was like flexing muscles that I hadn’t used in a long time,” says Parks, a registered nurse in the cardiac care unit at a hospital in the Atlantic provinces. “When you work in a hospital setting, you have a specialization. That’s what you have the most expertise in and it’s also usually what you focus on the most.”
The course – released a year ago by Canadian online healthcare learning provider HealthCareCAN, in partnership with the Mental Health Commission of Canada – is free, takes about 1-2 hours, and is available to anyone. The goal is to raise awareness about structural stigma, which can have a particularly negative impact on people experiencing mental health and substance use issues.
A type of stigma
In health care, structural stigma occurs when laws, policies, and practices result in the unfair treatment of people with lived and living experience. Such unfairness leads to inequitable access and a lower quality of care for these individuals, whether their concerns relate to physical health, mental health, and/or substance use.
This past decade has seen researchers—many of them Canadians—build a robust body of literature that investigates the impact of stigma in health care, more recently with a focus on structural stigma. Educational initiatives, like the course that Parks enrolled in, are based on that research, as well as insights from people with lived and living experience of mental health and substance with the aim of increasing understanding and awareness.
“With the material I already knew, it was more about bringing it to the forefront of my mind,” Parks explains, “but some of it was new. I took that course about 12 years ago and, since then, the insights and recommendations have changed, which is good. We want things to change.”
What changed?
More than 40 percent of respondents who took the course over the past year said they could describe the problem, as well as its impact on clients, identify where it existed in their organization, and “describe factors that contributed to the enablement of structural stigma in health care.”
Although there’s more than one problem created by structural stigma in health care, the central issue is that it creates a barrier for many marginalized populations. Not only has it been shown to discourage people from seeking out preventative care or early treatment, once people finally do seek treatment, stigma can lead to both poor treatment plans and missed diagnoses, the latter of which is often the result of “diagnostic overshadowing.”
Gretchen Grappone, a training consultant and clinician specializing in structural change, works with health-care professionals on dismantling structural stigma.
For example, someone with a substance use disorder could be be seeking help for anything from a broken arm to kidney stones but, once medical staff learn of the patient’s previous diagnosis of substance use issues, that diagnosis can overshadow other medical issues. That shadow can cloud the judgment of caregivers who suddenly only a “drug-seeker,” even though the patient might clearly be in pain and in need of medication.
“It’s super harmful,” says Gretchen Grappone, a licensed independent clinical social worker, whose work is now focused on training health-care professionals about structural stigma. “Because of diagnostic overshadowing, many people with mental illness or substance use disorders don’t get the treatment they need.”
Grappone recalls one example where someone went to the emergency room with serious chest pain but, because they’d been to that emergency department before and had been treated for borderline personality disorder, they weren’t taken seriously, Grappone says. “Then they died because they didn’t get the care they needed.”
Serious consequences
Incidents like this were part of Grappone’s motivation to shift her practice away from counselling individuals and towards providing education and training about stigma in health care settings. Another reason is that she has lived experience of depression.
“I didn’t get diagnosed until I’d experienced various forms of discrimination over many, many years,” she says. “That discrimination was related not only to seeking treatment for depression, but also because I’m openly gay, so it’s intersectional stigma.”
That personal experience, combined with her work as a clinician, Grappone says, gave her a front-row seat to many specific types of discrimination within the health-care system. That’s made her a valuable resource in the growing movement to dismantle structural stigma in health care, since research has shown that marginalized people who have experienced stigma have essential insights into that process.
Often, people with lived and living experience are the only ones who can see the problems that are baked in to practices that many take for granted as standard protocols. A good example is the code blue/code white dichotomy, that sees doctors paged to intervene in physical health crises (code blue), while the first responders to a code white, (violence or aggression) are often security personnel.
For example, in a follow-up survey, a course participant said they had experienced many code whites in their hospital (where a situation could be met with non-violent crisis intervention or physical restraint) but had not considered the patient perspective before taking the course.
De-coding the message
A patient in a mental health crisis, who may already be stressed and confused, may become agitated because of their experiences before the code white is called, they noted. “I can see why security being the first to arrive on the scene of a code white may not actually be the best option for the patient, as it may confuse or agitate them more, putting them on the defensive and escalating the situation further.”
Protocols like these are referred to as “coercive policies and practices,” and they represent an erosion of rights for patients experiencing mental health and substance use issues, who may be involuntarily admitted, physically restrained, and denied agency in decision-making about their health care.
It’s not easy to become stigma-free overnight (or, possibly, ever), but a good first step in challenging this discrimination is learning to see how the system works through the eyes of the people it’s failing. Many who took the Mental Health Structural Stigma in Healthcare eLearning Course said that the individual examples of stigma helped open their eyes to the issues.
It also helped them to recognize opportunities to address stigma, demonstrating that mobilizing knowledge to make positive change may be on the horizon. Nearly half of respondents said it encouraged them to make a change or take action to address structural stigma. Roughly the same number of graduates had gone so far as to plan ways to implement this new knowledge. At the same time, though, many expressed concerns that challenging the status quo might be an uphill battle.
“Yes, incorporating what I learned in the course into my work environment may mean I’ll face barriers such as institutional resistance, resource constraints, organizational culture, legal and regulatory constraints, and resistance from stakeholders,” says another survey respondent. “Overcoming these barriers will require persistence, advocacy, and creative problem-solving.”
Kristen Parks says that regular reviews and certification updates would also help people who want to transform the culture of care in any institution, citing annual CPR training as a standard practice. For example, everyone in a hospital from kitchen staff to administrators has to have CPR training. They may be in an elevator with a patient in an emergency, for example. Parks says this course could also be beneficial in a whole-of-healthcare manner.
“This course helped remind me that we always have to see the whole person, not just, say, the substance use,” Parks says. “There’s new knowledge out there and, if you’ve been out of school for 15 or 20 years, it may be completely different from what you learned.”
Take the course (free; 1-2 hours): https://chalearning.ca/programs-and-courses/structural-stigma-training-for-health-care-leaders/
Resource: What is structural stigma?
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Welcome to the second installment in the MHCC & series, designed to get to know our HealthPartners membership, and discuss where our realities intersect, and how best to support each other.
September is Muscular Dystrophy Awareness Month, so MHCC’s Vice President, External Affairs and Development, Allison Cowan, sat down with Stacey Lintern, CEO of Muscular Dystrophy Canada, to learn about the outsized strength and resiliency of a community too often overlooked and underestimated.
When I met with Stacey Lintern, CEO of Muscular Dystrophy Canada, she incisively captured the challenge faced by the neuromuscular disorder (NMD) community.
“We live in a ‘move it or lose it’ world,” Stacey explained. “This hustle culture doesn’t just threaten to leave people with NMDs behind – it can actually be deleterious.”
She gave the example of Duchenne muscular dystrophy, but she could well have chosen any number of the more than 160 disorders that fall under Muscular Dystrophy Canada’s mandate.
“Imagine a little boy [Duchenne affects people assigned male at birth] who is struggling to keep up in class, who seems tired, who can’t get his outdoor clothes on quickly enough…and he’s told to hurry up, to stop dawdling, to focus…and in reality, not only is he physically incapable of meeting these expectations, he’s doing damage to his muscles by virtue of trying.”
“With Duchenne,” Stacey went on, “which usually isn’t diagnosed till the illness has progressed, at say three or four years old, the child won’t produce any more dystrophin [which is required for maintaining muscle strength]. In short, they can’t regain what’s been lost, and the loss will have occurred more quickly due to the effort expended by the futile attempt to keep up.”
Unfortunately, in the case of Duchenne, and many other NMDs, those losses will continue to mount, shortening life expectancy and oftentimes requiring 24-hour care.
Untangling a complicated diagnosis
Given that neuromuscular disorders exhibit a grab-bag of symptoms, varied age of onset, and a spectrum of severity, their complex nature challenges our overstretched health-care system, and stymies the physicians charged with untangling the Gordian knot of diagnosis.
Muscular Dystrophy Canada interacts with upwards of 27,000 people as registered in their data base, about 16,000 of whom are caregivers. Keeping tabs on individual experience by following personal journeys informs the growing body of evidence the organization uses to influence policy changes.
“We are driven by evidence, which we work hard to translate into airtight advice for policy makers…these disorders require an outsized investment because their severity often means they put a disproportionate strain on services: from the health-care system to community and social supports, the list goes on.”
These “individually rare, but collectively common,” disorders – as Stacey eloquently describes them – produce a perfect storm of misdiagnosis and misunderstanding. Together, this reality creates a pervasive stigma, adding to the burden borne by people who’ve already been dealt some of life’s toughest cards.
The impact of uncertainty
“It can take up to 17 years to get a diagnosis in some cases,” explained Stacey. “It might start with muscle weakness in the hands, or a drop foot, and a lack of awareness even within the medical profession means people aren’t referred to neurologists, but rather physiotherapists, and, in some cases, psychiatrists.”
Contending with this uncertainty presents its own struggle, as people deal with their physical symptoms, while wrestling with the mental health challenges that accompany being dismissed or disbelieved.
“Add to this,” said Stacey, “the daily frustration of losing control of your own bodily autonomy, and you have a group of people who have to find the extraordinary inner strength to navigate a world that not only doesn’t accommodate their needs – but disregards them.”
Part of Muscular Dystrophy Canada’s mission is helping the community gain back some of the control they’ve lost.
“A point of pride for us is not just patient engagement, but patient leadership. Our job is to give them the platform, because these are some of the strongest, most resilient, most adaptive people I’ve ever met. And it’s not trite to say that they have so much to teach the rest of us.”
Taking back control
Stacey described the daily frustrations that someone living with a neuromuscular disorder could face, from waiting for an-in home attendant who might arrive at a different time every day; to struggling with mundane daily tasks, like doing up buttons; to the indignity of being unable to access basic health care due to physical limitations, like inability to transfer from a wheelchair to an examination table.
Compound this with a dearth of specialists, societal stigma, and the mental health burden of being faced with a progressive disease, and you have a community who would be justified in feeling excluded.
Stacey Lintern, CEO of Muscular Dystrophy Canadat
Yet, with the guidance of their membership, Muscular Dystrophy Canada is rewriting that narrative.
This includes a steep investment in a hotline that helps individuals and caregivers access accurate, timely, and relevant information about the latest research, treatments and clinical trials. And a patient education program that equips people with lived experience with the knowledge and skills to peer-review potential research studies and evaluate outcomes.
Muscular Dystrophy Canada doesn’t just pay lip-service to a person-first approach. They put their money where their mouth is.
Leading from behind
“We work in partnership with clinical peer-reviewers, so we extend the same opportunity to patient reviewers. It’s a signal that they are as valued and important to the process as the clinicians sitting next to them,” said Stacey. “We believe in the ‘nothing about me without me’ ethos, and it’s a commitment we share with our international peers. We challenge each other to think harder and smarter about how to bring people with lived experience into every aspect of our decision-making.”
In responding to a need identified by the NMD community, the organization is also providing accredited ‘Master Classes’ to doctors, nurses and allied health professionals, to generate a broader understanding of the disorders, and, ultimately, create a pathway to speedier diagnosis.
“Time is of the essence,” said Stacey, referring specifically to the urgent need to expand newborn screening panels to include Spinal Muscular Atrophy. “It was the most fatal genetic disorder for children under two…but we have worked to change that.”
The organization had a plan to advocate for widespread screening, which would need to be adopted province-by-province and territory-by-territory. By dint of hard work – and hard evidence – they advanced their eight-year timeline by a full five years.
By September 2024, every province and territory will be participating. Thanks to Muscular Dystrophy Canada’s relentless commitment, infants can now receive life-changing treatment before symptoms even develop – no matter where in the country they were born.
While Muscular Dystrophy Canada counts this as a triumph, it’s also a reminder of how much work the organization has yet to do. Stacey wants these panels expanded to include more NMDs, but her ambition doesn’t stop there.
“All people are not treated equally – or equitably – in our community,” Stacey said. “It’s already difficult enough to access to innovative therapies in Canada, but for some members of our community, a baseline for participation in a clinical trial is a six-minute walk test. If you can’t meet that threshold, you’re dismissed out-of-hand.”
Lowering barriers
A former clinician herself, Stacey worked in community nursing to help integrate people with disabilities, and she’s hurt and indignant on behalf of those whose opportunities and contributions are limited by arbitrary barriers.
“MDC was asked to co-lead the consultations for Canada’s Disability Inclusion Action Plan, and our findings weren’t surprising…better access to treatment, accessible and affordable housing, employment accommodations…and among our own community, we’ve heard repeatedly that mental health supports are imperative to coming to terms with a life-altering prognosis.”
Stacey elaborated that when an individual is finally handed a definitive diagnosis, the rush of relief that comes with validation of symptoms can be quickly eclipsed by the overwhelm of processing the news.
The mental health care imperative
“When the trajectory you’re facing is something like, a boot for drop foot, then perhaps a cane, a scooter, a wheelchair, a ventilator…when you’re marking reverse milestones, there is an urgent need for psychological support, to help to cope with anxiety and depression. This is an imperative, not a nice to have.”
In short, mental health care among the NMD community is must, and ditto for caregivers.
Part of Muscular Dystrophy Canada’s work is finding sponsors for caregiver retreats, offering much needed respite for the spouses, parents, or children of people affected. Their mental health is equally challenged and is among the top services sought through the organization’s patient support resources.
“We are working so hard on behalf of this community. But our efforts, no matter how dedicated, cannot compare with how these individuals show up every day. We cannot, and should not, measure their worth by artificial benchmarks – like a six-minute walk. It’s ascribing a value based on such a narrow and inexhaustive metric. What about their family life? Their friendships? Their jobs? Their volunteerism? And they do these things over and above the daily challenges they overcome.”
As our conversation came to an end, Stacey left me with this thought, and it’s one I won’t soon forget.
“These are the most resilient people I know. They are everyday heroes. They don’t need pity or platitudes. They need, and deserve, access to opportunities equal to their inner strength. It may be hidden to some, but for those of us who have the privilege of working with this community, it leaves us in awe – every single day.”
