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How compassionate health care can alter the trajectories of people who use substances.
Jes Besharah doesn’t remember how long they’d been living on the street and using opioids by the time they sought medical care, but they remember being in bad shape.
“I was sick, I was hurt, I was crying, I had abscesses and wounds all over my body. I had many needs that needed to be addressed,” they say. But when the nurse came in and looked Besharah up and down, all she saw was a drug user.
“We didn’t take care of anything at all. She told me she would pray for me, and that was the best she could do.”
For Besharah, it was a crushing response. “It just makes it seem like there’s no point in trying when that’s the answer that you’re met with.”
Unfortunately, Besharah isn’t alone. People who use opioids and other substances often encounter stigmatizing attitudes and discrimination, including from the health-care workers they turn to for care.
The Mental Health Commission of Canada (MHCC) invited Besharah to share their experiences of stigma and its impact in a video called Use Your Voice — Reducing Stigma Toward People Who Use Substances.
“For people who use opioids and other substances, stigma can be a powerful barrier to seeking and receiving quality care,” says Julia Armstrong, manager of MHCC’s mental health and substance use health team. “We created this video (and discussion guide) to start important conversations about stigma in health-care settings — the kind of conversations that lead to better understanding and a higher standard of care for these individuals.”
The video also features the nurse that helped change Besharah’s life — Melinda Billett.
As a primary care nurse practitioner, Billett has had years of experience supporting people who use substances. She has also seen first-hand how small choices can have a powerful ripple effect.
“In health care we can make the choice to treat people with respect,” she says, for example in the notes providers make in a patient’s file. “That’s my voice that someone else is going to read. So, I can choose to say that this person is a drug addict, or I can choose to say this is a person who uses substances.”
In making that small change, Billett is drawing on the power of person-first language, which can help distinguish who someone is from the substances they use or the mental illness they live with.
While both describe other changes that health-care workers — and anyone interacting with people who use substances — can make to help curb stigma, every example comes back to one overarching message: treat individuals who use substances as people, not problems.
Besharah credits the compassion they received from Billett and others for the life they lead today, working as a community harm reduction support navigator and peer support worker. “Part of the reason that I do it is because, when I was on the streets, there were people doing outreach that didn’t judge me, that cared about me, that would go out of their way to make sure that I was still around,” they explain. “That made a huge difference in me wanting to take back control of my life.”
Billett emphasizes that people who use substances have a great deal of inner resilience, and it’s up to health-care providers at every level to recognize it. “If we can tap into that, and be kind to them, and care for them and meet them where they’re at . . . then those things together is what can help change the trajectory of someone’s path.”
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Putting substance use on a spectrum creates a space for more open conversations about safer, healthier, more manageable consumption.
Part of the Mental Health Commission of Canada’s work involves education on the distinction between mental health and mental illness. Mental health — an aspect of overall health — exists on a spectrum we all share. One end of the spectrum reflects optimal mental health, while the other shows where mental illness or mental health problems occur. A spectrum model is also helpful when we talk about substance use.
What it means
Toward one end of the substance use health spectrum, a person might abstain entirely or engage in sporadic use without any adverse consequences. At the other end are substance use disorders with far-reaching effects on overall health and well-being. Depending on the circumstances and a multitude of factors, anyone can move along the spectrum at any time.
Why it matters
Due in part to a long history of criminalization and secrecy around drugs and alcohol, a negative undertone persists. This way of thinking may lead people to see all substance use as problematic. On the other hand, putting substance use on a sliding scale helps create a space for more open conversations about safer, healthier, more manageable consumption — whatever that looks like for each individual.
Reducing stigma around substance use is also an important part of fostering recovery. The less negatively we judge substance use, the more comfortable a person might be about disclosing a concern about their own or someone else’s situation. For someone struggling with substance use, understanding that they can achieve safer, healthier consumption without (or before) complete abstention can help instil hope when they need it most.
How you can use it
Adopting the term substance use health can challenge personal biases and binary thinking. Substance use isn’t black and white. It’s not about being addicted or abstaining entirely. There’s a wide, grey area of movement, nuance, and individual circumstances in between. As with all mental health, the way we think and talk about substance use matters. The better we understand the substance use health spectrum, the better we can support people through every stage of recovery.
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What makes a funeral great? The good, the bad, and the gaudy of saying goodbye.
Perhaps it’s a sign of age, but I find myself at more funerals lately — and I’ve started to rate them. No, I’m not evaluating how much money was spent on the spread, flowers, casket, or urn. Let’s be honest, whether you had it catered or cajoled your friends into helping, egg salad sandwiches are egg salad sandwiches. I’ve never attended a funeral for the food. The thing I’m rating is whether the event gives me and those closest to the departed the opportunity to grieve.
I’m not looking for a maudlin affair, nor am I trying to make myself sadder. I just want to feel like I can say goodbye and perhaps learn a thing or two about the person who passed.
I expect funerals to be as diverse as the dead. Some are formal affairs with participants sharing whispered conversation in church pews. Others are more casual gatherings held in a pub while images of the departed run in a loop meant to recall happier times. Still others change locations, churches, gravesides, or pubs as the rituals of death are played out according to the desires of the departed or those left behind.
Ire and brimstone
I don’t have a preference, really. The activity just needs to do what it should to help people grieve. What doesn’t impress me is when things unrelated to the process of saying goodbye take centre stage. I’ve lost count of the number of times I’ve showed up for a funeral service only to find myself in the middle of sales pitch on the benefits of going to church. (The word “eternal” is used a lot.)
Don’t get me wrong. We’re a captive audience and I can see the appeal of making such an appeal. I also have no objections to a religious service. But I am repulsed when the official takes the opportunity to dominate the moment, make a political pitch, heap guilt on the unfaithful, chastise the living for their lack of attendance or, in one instance, silence family members who wanted to say a few words of farewell.
Low scores also happen when the business of funerals becomes too apparent. A good example is when the officiant hasn’t taken the time to learn the name of the departed and either mispronounces or forgets it all together. Those are jarring experiences that pull mourners out of the moment and force them to consider the transactional nature of the event.
Sometimes, of course, things go horribly wrong, like when the dearly departed gets misplaced or the wrong body is cremated. In one funeral I heard about, instead of the usual photos of the loved one running in the background, mourners were accidentally shown four minutes of porn. Give that funeral a zero.
An out-of-the-box affair
If I’m being fair, the failure is not always the down to the officials. Quite often, the mourners or attendees make the event one to remember for all the wrong reasons. I’ve yet to take a selfie at a funeral, but apparently that’s an increasingly popular activity. Then there are the brawlers and catcallers who see the funeral as a great place to start a fight or settle a score, because who doesn’t go to a funeral to catch a boxing match — the end point in some decades-long petty pileup of grievances between estranged family members?
In China, exotic dancers at funerals became so problematic that some cities had to intervene. If you’re wondering how this came about, it’s based on the idea that large crowds at funerals are a sign of good luck for the deceased in the afterlife. So, to draw more people, some organizers started to bring in dancers. Since children also attend these funerals, the whole thing is just hard to justify.
Sometimes I want to ask if they could take that somewhere else or save it for after the funeral. Unlike weddings, there is no dress rehearsal. That means people are often emotionally raw, numb, or overwhelmed. Grief is also very personal and has different outlets for different people. Some cry, some don’t. Some yell, and some sink into themselves. People grieve for a few weeks, months, or years, and different cultures, personalities, loved ones, or stages in life will also affect how and how long we grieve.
No matter what your grief “tenure” is, the funeral is often the start, and it’s frequently where people remind themselves of their social safety net. While a 2022 mixed methods review of the effect funeral practices have on bereaved relatives’ mental health and bereavement outcomes was inconclusive, qualitative research provides additional insight: the benefit of after-death rituals, including funerals, depends on the ability of the bereaved to shape those rituals and say goodbye in a way that is meaningful for them. Findings also highlight the important role of funeral officiants during the pandemic.
Funerals can be a tangible way to show support for the living. They may provide companionship during a difficult time and can be a fundamental part of how we mourn. But they should help us to process the loss and actualize a person’s death. If the thing I’m discussing as I drive away is the officiant’s fail or the fight out front, then the funeral is a flop. I don’t go for dinner and a show. I’m not trying to be converted. I go to get and give support.
Debra Yearwood, CHE, made a conscious rap playlist after researching this story. Her work appears regularly in The Catalyst.
Illustration: Holly Craib
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We ask practitioners for a reality check on the TV series about therapy, grief, and getting by.
With season one of the popular series wrapping soon, we’ve been following along as the main character Jimmy (Jason Segel) — in all his human fallibility — crosses boundaries with his clients, tries to process his grief, and leans on his fellow therapists, Gaby (Jessica Williams) and Paul (Harrison Ford), as they stumble through life’s ups, downs, and sideways trajectories. How does it end? Is everyone fully self-actualized? Does this kind of stuff happen in real life? We surveyed a few experts to get their take.
The three principal characters often debrief with each other after managing challenging client situations — a kind of rapport-building that happens in many workplaces. In this instance, it seems like the therapists have therapists. Is this a regular dynamic?
In short, absolutely. As a consultant, being in community is necessary to the human healing process.
A lot of therapists have naturally been drawn to this work because, just like our clients, we too are actively riding the ebbs and flows of the human experience: the joys and the pains. Part of what serves the authenticity of the therapeutic relationship is your therapist’s ability to hold space for all of you — both the pleasant and unpleasant experiences.
The truth is, it’s very difficult to hold space and support clients in compassionately witnessing their emotional injuries if we haven’t been willing to do the same for ourselves. This must be an embodied practice, a lifestyle that encourages our clients to show up for themselves while we actively engage in practices that also support us as practitioners. Doing that helps us develop and strengthen our emotional boundaries and promote safety, so that by taking care of our “stuff” it doesn’t interrupt or intrude on our client’s process.
This dynamic was often shown in different scenes with Jimmy, who “presented” as frustrated with his client’s pace of change. As the show progresses, we learn that he has been “numbing” (or shutting down) his emotions since the loss of his wife while struggling to connect with his grief.
Sara Smith is a registered psychotherapist with the Live Free Black Therapist Collective.
As a therapist, having a space where you are supported in seeing the most vulnerable parts of yourself allows you to show up for your clients as a human with lived experience who is ready and willing to walk alongside them on their healing journey.
I regularly access support from my peers and connect with my own therapist. An accessible connection with other colleagues while supporting clients who face challenges is integral to how we as therapists compassionately care for ourselves and others, including other therapists. When Jimmy lost his connection to Paul after a conflict, he really struggled.
In truth, I think this is a metaphor for life. We need each other, and we thrive when we have access to deep and meaningful connections with others where we can be seen, heard, and accepted. Viewing these interactions on screen was an important reminder of that.
Sara Smith is a registered psychotherapist with the Live Free Black Therapist Collective based in Toronto. She specializes in supporting adults in working through the far-reaching impacts of trauma on the mind and body. Sara’s approach is rooted in building embodied awareness, education, empowerment, and validating your experiences while working together to develop effective coping strategies to support your healing journey.
Those are nice offices with Architectural Digest-level ambitions and calming neutral tones. Are your offices that nice? What makes for a good therapeutic environment?
The offices that are depicted in Shrinking are very spacious and nicely decorated in neutral colours. The style they show is one school of thought for therapy offices: a blank canvas that leaves space for the client to think and imagine.
It is similar to the therapy offices shown in The Falcon and Winter Soldier, which is supposed to be a neutral space where the hand of the therapist is not seen at all. The goal of this style is to not reveal anything about the therapist to the client. In this case, the therapist is supposed to be a neutral party, almost not a person in the eyes of the client — they are a therapist, not a person in their own right.
While plenty of therapists follow such design choices — and might even go so far as to take off personal jewelry, such as a wedding ring or a “Best Dad” tie clip — others do the opposite. These therapists choose to show their style in how they decorate. They might stick up posters of favourite movies or show off collectible items. The idea here is to be a human to your clients and be on a journey with them.
This is the decor style I personally use. My goal is to have my clients know a bit about who I am when they look around the office and to start considering whether they’ll get along with me.
It will be interesting to see if Jimmy starts to change up the decor of his office to reflect his more open approach with his clients. Paul is very stoic and distant from those he works with, and keeping out personal elements makes sense for him. Gaby seems to be in the middle. Her overall office decor is quite neutral, although she has several personal touches that make it more hers than what we find with either Paul or Jimmy. Perhaps these changes will be shown in season two.
Dr. Megan Connell is a board-certified licenced psychologist, practising virtually in more than twenty states. She lives in Charlotte, North Carolina, is an avid geek and gamer, and is passionate about teaching others how to use role-playing games such as Dungeons & Dragons in therapy. Watch for her forthcoming book: Tabletop Role-Playing Therapy: A Guide for the Clinician Game Master (Norton, March 2023).
Compassion fatigue seems to be a through-line for each story. How do you manage this in your own life?
The show highlights our humanness and how we tend to put therapists on the “all knowing” pedestal. I remain aware that I am human, too. I’m not a guru and, with humility, I’m mindful of my own tendencies toward self-proclaimed pedestals. I guide as best I can and (frequently) remind myself that I can’t control the outcomes.
I have my own team of professionals and friends that I can debrief with and be in care of my own mental, physical, and emotional health. I’m also in tune with the times I need support, and I’m careful not to judge myself for sometimes feeling less-than. On the show, we witness Paul’s challenges in accepting support from his daughter, and this reminds us that sometimes the helper needs the help.
Boundaries are key, and we see this with Paul many times. When he says he’s not going to do something, there is no waffling or justifying. He knows his limits and honours them.
I have my own go-to’s when I find myself feeling overwhelmed, including routines. Like Liz (played by Christa Miller), who collects and polishes stones as a form of meditation, I blast calming music in my house and stare out the window at the beauty of nature, and this helps ground me. In the shower, I will visualize all the thoughts that don’t serve me going down the drain as the water runs off my body.
Choosing to eat what I like to call feel-good foods is another — blueberries are a favourite. They nurture my health (body and mind) and are full of vitamin C to help with stress.
Having a good laugh, even at myself — not taking myself so seriously — and letting my hair down puts things in perspective and reminds me of the beauty of what we call life.
Yvette Murray lives in Tiny Beaches on Georgian Bay, which she considers her sanctuary. She believes that being surrounded by nature does wonders for her mental health. Yvette is the author of The Mental Health Contagion: Navigating Yourself Through a Loved One’s Mental Well-Being Decline (forthcoming). She is a mental health advocate, influencer, and keynote speaker; a psychotherapist; and a facilitator for the MHCC’s Mental Health First Aid (MHFA) virtual certification program. MHFA is available for those who are supporting adults, youth, and/or older adults. It trains participants on how to recognize a loved one’s mental health problem, have that conversation, and get the best help.
Inset: Sara Smith is a registered psychotherapist with the Live Free Black Therapist Collective.
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The shift away from saying “committing suicide” goes beyond semantics.
This article is part of the Catalyst series called Language Matters.
Outdated language has a way of sneaking up on you. Sometimes it’s egregious — like a racial slur, for instance. Other times, it’s more subtle — like an expression you suddenly realize you haven’t heard for a while. For many people, the language around suicide is likely to fall into the second category.
Until a few years ago, it was common to hear that someone “committed” suicide after taking their life. The expression was pervasive across all forms of media and in everyday conversation. Then, the paradigm started to shift. More and more people, from health-care workers to journalists to people with lived and living experience of mental illness, adopted “died by suicide” as the better alternative.
What’s the difference?
The third edition of the Mindset media guide for reporting on mental health offers one of the best rationales behind the change: “Don’t say a person ‘committed suicide.’ This outdated expression, linking suicide with illegality or moral failing, can make it harder for others to seek help, or for families to recover.”
The term “commit” is most often associated with some sort of crime. For example, we still regularly hear that someone “committed murder” following a homicide, or “committed fraud” after a scam. These expressions imply a disregard for the rules of law and moral or ethical standards while casting judgment on the actions taken.
When talking about a suicide, such implications have no place. Suicide is preventable with the right interventions. But if admitting thoughts of suicide feels like confessing a crime, it’s not hard to imagine why someone might hesitate to reach out for support. When you factor in the feelings of low self-worth and hopelessness that often accompany suicidal ideation, the stakes involved in the language we choose are raised even higher.
Then there are those left behind. Following a suicide, it’s estimated that 135 people are affected by the loss, with 7 to 10 being significantly impacted. So outdated language can further complicate the grieving process by adding undue stigma.
By contrast, saying or writing that someone “died by suicide” helps reframe the death as a loss rather than a crime. It’s an opportunity to replace condemnation with compassion, and swap stigma for support.
For someone struggling — with their own thoughts of suicide or the death of a loved one — that can mean the difference between staying silent and speaking up.
New hope on the horizon
By the end of 2023, Canada is set to launch a three-digit suicide prevention number. When someone dials or texts 988 from anywhere in Canada, they’ll be connected to a free mental health crisis or suicide prevention service. Experts say this nationwide number can not only reduce the stigma associated with reaching out for help, it will also save people the time it would take to remember or search for a crisis number. When it comes to preventing suicide, every second counts.
Did you know?
- It may not be obvious that someone is thinking about suicide. Learning the warning signs can be helpful for knowing how and when to offer appropriate support.
- Asking someone if they are contemplating suicide will not make it more likely. In fact, showing concern can be a helpful way to establish social connection and promote hope in the moment.
- Removing or limiting access to things like firearms and prescription medications is often enough to prevent suicide. This kind of means restriction is effective in preventing suicide, as many people won’t seek out alternatives.
Resources
If you or someone you know is in immediate danger, call 911.
- Talk Suicide Canada: 1-833-456-4566 (or text 45645 from 4 p.m. to midnight ET)
- For Quebec residents: 1-866-APPELLE (277-3553) (or text 535353, 24-7)
- Kids Help Phone: 1-800-668-6868 or text CONNECT to 686868
- Hope for Wellness Helpline for Indigenous peoples: 1-855-242-3310 (24-7)
- Trans Lifeline: 1-877-330-6366
- Canadian Association for Suicide Prevention
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A suite of culturally adapted cognitive behavioural therapy tools is designed to break through barriers.
It was hard to hear clearly at first, but once they figured out the practicalities of a virtual therapy session in which the client was calling her from her closet, things started to go smoothly.
“In my past roles, a call from a closet would not have been a session — we would have asked that the client cancel it,” explains Helen Yohannes, a registered psychotherapist at the Somerset West Community Health Centre in Ottawa, and one of 29 practitioners in a research project to test a new form of psychotherapy for South Asians in Canada who are affected by anxiety and depression.
“There might be a client who is hiding their therapy from their family,” Yohannes says. “In this study, we accommodate for things like that. We are looking to the client’s needs, rather than what we think is an effective process.”
This was one takeaway from the study Development and Evaluation of Culturally Adapted CBT to Improve Community Mental Health Services for Canadians of South Asian Origin, produced by the Centre for Addiction and Mental Health (CAMH), the Mental Health Commission of Canada (MHCC), with site partners Moving Forward Family Services (Vancouver), the Ottawa Newcomer Health Centre, and Punjabi Community Health Services (Toronto). From the research, a suite of culturally adapted cognitive behavioural therapy (CBT) tools was developed for use with clients from these communities.
What is cultural competence?
Adding cultural awareness can make CBT — known informally as the “gold standard” of therapy — more inclusive to non-Western communities and improve its acceptability and impact. “Regular” CBT tends to focus on a person’s day-to-day problems and help them interpret and evaluate what’s happening around them. Culturally adapted CBT does this too but with subtle, effective adjustments.
Cultural competence is broadly defined as the ability of providers and organizations to effectively deliver health-care services that meet the social, cultural, and linguistic needs of patients. In practice, it translates in various ways.
For example, clients in the study expressed a desire for the therapist to build rapport and to burnish the clinical feel for a warmer dialogue with a bit of personal disclosure — something that may have an out-of-guidelines feel for some practitioners.
“People who are socially skilled or emotionally intelligent tend to do these things in a very smart way,” says Dr. Farooq Naeem, a professor of psychiatry at the University of Toronto and CAMH clinical scientist who was the principal investigator for the study. Naeem also co-developed the Southampton Adaptation Framework, based on a 2006-2009 study in Pakistan that informed the new research.
At the start of our interview, we exchange notes on our cultural backgrounds, and he cites this mutual disclosure – a friendly where-are-your-fromming – as the kind of door opening that helps with cultural adaptations to CBT.
“It is a way of trusting – before getting right into the personal information,” he says.
Additional tips and tools also encourage practitioners to engage the client’s extended family in a collectivist approach to therapy and treatment.
Feedback from study participants has also helped to shape practitioners’ approaches to treatment. For example, some clients felt they were instructed to go against their beliefs and values for favourable results in therapy. In one case, a counsellor telling a client to draw hard boundaries with their parents was seen as overly simplistic when family dynamics were not aligned with such an approach.
Also important is understanding how spiritual practices fit within a client’s perspective.
“The individual may have their own idea as to what is causing their challenges, which could be rooted in religious or spiritual beliefs,” says Kamlesh Tello, a program manager at the MHCC, focused on access to quality mental health services, and part of the project team.
“Circumstances that have come about could be attributed to God’s will, karma, or an evil eye, for example. It’s important for the provider to know how to navigate that with the client.”
Practitioners are advised to have discussions with the client about their perspective, without disagreeing or suggesting other explanations, to help form connections with the client’s thoughts and feelings.
However, in other scenarios, care providers are advised to use more directive methods in therapy sessions, which can seem like conflicting guidance. Naeem bridges the disconnect.
“Many non-Western cultures are still very hierarchical in their style of communication, which is sermon-style compared with a Socratic dialogue — open, guided, curious — which is CBT-style,” he says. “They will doubt your judgment if you ask them about a therapeutic approach.”
This does not apply across the board, once you factor in acculturation — how Westernized one is in this context. Naeem advises against generalizing. Rather, providers can take a self-reflective approach that allows them to confront their conscious and unconscious biases while working with South Asian clients.
Structural stigma
Even with awareness efforts, clients in the study acknowledged the wider systemic challenges of racism, discrimination, immigration and settlement, and other socio-political factors beyond their control that affected their identity, societal role, and mental health. As a caregiver from the Greater Toronto Area noted, “There is bias in therapies, bias in systems, and bias in people who control these systems. They’re not aware of it, or even if they are, they’re in denial of these biases wrapped within these systems. And these biases will definitely impact the way therapies are delivered to people who are marginalized, people who are disadvantaged, and people who belong to equity-seeking groups.”
Such biases discourage the use of mental health services, as research shows these communities are less likely to access help than are other people in Canada. About seven per cent of Canada’s population (2.6 million people) identify as South Asian, making it the country’s fastest-growing racialized group.
Beyond words
The suite of self-paced training videos and guides on culturally adapted approaches to CBT for South Asian communities can help practitioners from any cultural background, Yohannes says.
“I thought, ‘I’m not South Asian, I am East African from Eritrea — I probably have some cultural similarities’ — but I was also hesitant. What if clients did not want to see me?” Thankfully, those thoughts were quickly debunked.
“The people in the study just wanted someone who was competent to provide therapy and be open to cultural aspects that could change the way we implement therapy, or even how we have our sessions,” she says (citing the client-in-the closet scenario), as well as changing norms within the profession.
“You see a lot of cultures where there is a hesitancy to talk about what goes on at home with strangers. There can be a sense that the client is not ready to open up, and then they are sent away and told to come back when they are ready to talk. I have seen that with therapists who may not be as culturally aware. It is something to work through.”
Yohannes says that therapists must be willing to learn and be open to conversations about racism. “You can’t escape that topic. You have to have the ability to talk about microaggressions or anxiety and depression and how it relates to race.”
This was confirmed by study participants who felt that therapists who had received culturally adapted CBT training could relate to the client’s circumstances. “I didn’t have to spend time informing, training, or educating the [therapist] about my culture or realities of being historically and culturally persecuted,” a participant said.
This understanding helped with retention and completion rates for therapeutic sessions with the study’s 146 participants — half of whom received culturally adapted CBT (versus half with standard CBT). Their countries of birth included Canada, Afghanistan, Bangladesh, India, Nepal, Pakistan, Sri Lanka, England, the United States, Qatar, the United Arab Emirates, the United Kingdom, and Sweden. Religious or spiritual affiliations included Hinduism, Islam, Sikhism, Buddhism, Christianity, Zoroastrianism, atheism, and agnosticism.
“Multicultural and cultural — we use these words a lot, but I don’t know that we unpack them as much,” Yohannes says, when talking about the term “culturally aware.” She says that practitioners cannot apply one type of therapy to every group and assume it’s going to work, as such rigidity and generalization goes against the spirit of the work. Rather, it’s about an openness to new approaches and a willingness to shift them.
“That’s when you see people more willing to talk about mental health.”
Fateema Sayani is constantly re-examining her relationship with technology. She is the Manager, Content, at the Mental Health Commission of Canada.
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Since there’s no cure, those affected must work to manage their symptoms. An innovative hospital program takes an interdisciplinary approach encompassing physical, cognitive, and psychosocial care.
When Lisa Evans gets up each day, she’s faced with a tough choice: shower or wet wipes.
It’s a decision she never dreamed she’d be making a year and a half ago, when she was full of energy, exercising several hours a week with ease.
More than a year into her battle with post-COVID-19 condition, also known as long COVID, Evans is grateful if she can walk more than a few blocks. It’s just one of the many changes that have made her life feel surreal.
In fact, Lisa Evans isn’t even her real name. She requested anonymity because she fears discrimination by her employer and judgment from her peers.
“This is the height of vulnerability,” she says. “Every day I’m scared of something. Will my symptoms get worse? Will I need a caregiver? Will I be able to breathe? I can’t afford to worry about negative perceptions about my work on top of it.”
For me, her precaution needs no explanation. When my own COVID-19 symptoms lingered several months longer than news coverage led me to expect, I dreaded every question about my progress from well-meaning colleagues. I relied on tried-and-true responses like, “still not quite 100 per cent,” when what I wanted to say was, “Every work day feels like a marathon I didn’t train for.”
While my own symptoms subsided half a year later, Evans continues to suffer from debilitating fatigue, dizziness, headaches, irregular heartbeat, and disturbances of taste and smell. With her once favourite foods having lost all appeal (tomatoes now taste like “rotten socks”) and cooking becoming a Herculean task, she has also lost nine kilos.
We are far from alone in these experiences. Initially, the World Health Organization estimated that between 10 and 20 per cent of people who were infected by the virus experienced a post-COVID condition — defined as “the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.” Updated research suggests that 30 to 40 per cent of people who have caught COVID still report symptoms beyond three months of their initial infection, with new data changing these numbers all the time.
Beyond the statistics
Few people can put faces to the figures quite like Wendy Laframboise, a nurse practitioner who coordinates the post-COVID rehab program at The Ottawa Hospital. With 287 referrals and more than 400 sufferers and caregivers reaching out for support (so far), Laframboise is intimately aware of the realities of long COVID.
“Most of our patients are not the people you’d expect to have lasting symptoms,” she explains. “These were very high-functioning, athletic, successful people with little if any previous medical history. Now, almost all have had to put their jobs — and their lives — on hold.” For the few who remain employed, she tells me, the decrease in functionality often means an increase in stress and anxiety around work.
The Ottawa Hospital
Since there’s no cure for long COVID, the program aims to help patients manage their symptoms and improve their quality of life across three domains: physical, cognitive, and psychosocial. The model is based on the hospital’s chronic pain program and draws on research from the rehabilitation unit’s work with traumatic brain injuries and chronic respiratory diseases.
Over four weeks, patients work with a nurse practitioner, a respiratory therapist, an occupational therapist, a physiotherapist, a dietician, and a psychologist in highly interactive, virtual sessions. Through education, discussions, and goal-setting workshops, they learn to cope with symptoms like breathlessness, stress, and poor concentration (often referred to by long-COVID patients as “brain fog”).
The results so far have been overwhelmingly positive, with patients showing improvements across all three domains, both at the end of the program and at the three-month followup stage. For some, improvement means breathing more efficiently. For others, it’s the difference between playing with their child and being confined to bed.
Laframboise credits the interdisciplinary team with much of the program’s success, which includes the active involvement of a rehabilitation psychologist.
“Long COVID takes a significant mental toll on everyone,” she says, noting that depression and anxiety often appear for the first time or get worse in those who already have it. “The most common feeling patients express is a loss of their previous self. There’s lot of frustration and guilt about what they’re no longer able to do — in their relationships, for their kids, and for themselves.”
Laframboise adds that there’s a very real stigma associated with invisible illnesses, especially one as new as long COVID. “People can’t believe it’s possible to go from 100 per cent to 10 per cent. But it is.”
To complicate matters further, she tells me, there’s no clear healing trajectory. Unlike a broken leg with established healing milestones each week, long COVID is neither linear nor consistent. One week someone might have a headache and dizziness; the next it could be ringing in the ears and shortness of breath.
Misunderstood — and missing out
Evans is all too familiar with the roller coaster of symptoms, and the isolation that comes with it. “I spent the whole summer on the couch. All I wanted was to be outside in the sunshine, but my body wouldn’t allow it.”
While physical limitations continue to keep her isolated from the world beyond her apartment, it’s the lack of understanding that isolates her from her friends and family.
“People in my life have suggested that I try just getting a little more sleep,” she says, adding that friends have grown impatient with her absenteeism and cancelled video calls. “There’s not enough sleep in the world that could fix this.”
In search of some common ground, Evans joined a Facebook group for so-called COVID long haulers in Canada. The group is private, and only those with long COVID and their families are permitted to join. At this point, it has more than 18,000 members.
“There are new posts every day about experiences like mine,” Evans tells me. “Some people are into their third year with these symptoms and have run out of hope. No one else understands what it’s like.”
In working with the post-COVID rehab program, Laframboise has been surprised most by two things: the impairment wrought by the condition and the power of validation.
Even before starting the program, patients on the wait list are assured that what they’re experiencing is legitimate and, despite how it may feel, they are not alone. The program also leaves plenty of room for open discussion, both in group and one-on-one sessions with experienced clinicians. Giving patients these opportunities to share their experiences without judgment is more beneficial than Laframboise could have imagined.
“Once patients feel validated in their experiences, it’s easier for them to focus on techniques to cope with what’s happening,” she says, explaining that everyone is taught to “pace, plan, and prioritize” their daily actions within the confines of severe fatigue — the most pervasive of long COVID symptoms.
Wendy Laframboise, Nurse Practitioner
Pacing, planning, and prioritizing are concepts Evans has had to learn on her own, and she credits them with her ability to keep working. “I’ve learned to perform a cost-benefit analysis for my day, calculating exactly how I’m going to use my energy,” she says. “I have to choose if I’m going to work, cook dinner, or do laundry because there’s only energy for one.”
Rethinking productivity — and everything else
Evans’s other takeaway from her experience has been somewhat harder to process. She’s learned that, in many ways, society isn’t made for people with disabilities. Necessities like groceries cost more when you always have to pay for delivery. Likewise, the mobility scooter that could give her added freedom would mean paying for an extra parking space in her building, or else heaving it over the threshold of her front door.
But Evans has realized that ableism goes much deeper than our pocketbooks. “We’re programmed to put productivity above everything,” she says. “We ask, What did you do today? instead of, What did you think today? What did you feel today? Maybe those are the questions we should be asking each other.”
Hearing this, I can’t help but think of recent headlines touting new research that says most long COVID symptoms should resolve themselves in a year. My own post-COVID symptoms lasted six months, and the thought of doubling it leaves a knot in my stomach. A year of missed opportunities and unmet goals. A year of choosing rest over writing. A year of tuning out conversations and in to my own breathing. A year of foggy milestones — two full holidays I barely remember. I learned that being semi-present is a lot like not being there at all.
As for Laframboise, she is grateful for the relief The Ottawa Hospital program has brought to so many, but she knows it’s not enough to meet the need. “I want the word to get out about this for people like my patients. They need more programs to help them get their lives back, and they need them now.”
Evans agrees that there is much to be done to support people like her, with research, resources, and understanding all sorely lacking. Still, she isn’t giving up hope. “I’m determined not to let another summer pass me by,” she says. “Even if it takes all of my energy, I’m going to feel the sunshine on my face.”
Resources:
The Ottawa Hospital’s post-COVID self-management program
COVID-19 Resources Canada
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The ABCs of finding paths to ACB mental health care
My son asked me for help to see a therapist, and from where I sit that was a win. He recognized that he needed help, which speaks to his intelligence and self-awareness. Colour me a proud mom.
Not everyone can spot when they’re in trouble, and in the heavy machismo often promoted to young Black men through music and fashion, self-awareness is a powerful tool. That he could ask his mom for help makes me feel like I’ve done something right as a parent. I hate that he is hurting but love that he can see it and ask for support.
Less fun was moving through the conversation with him and realizing that he wanted a therapist he could relate to: an ACB (African, Caribbean, and Black) male. Don’t get me wrong. It’s a reasonable request. It’s just that finding a Black therapist in Canada is like finding a winning lottery ticket. They exist, but they’re few and far between.
So, I began the process of looking. At least I’m lucky enough to know some people who know some people. Maybe one of them can get me a lead on a therapist. But there’s also the wonder of Google. Believe it or not, Googling often works, and I soon found myself on the Canadian Psychology Today portal looking at an array of ACB therapists. The next hurdle was trying to figure out who would be the right fit. It’s not enough to be ACB, you’ve also got to have the right experience. But before I could even figure that much out, I found myself wondering what the difference was between a social worker and a psychotherapist, which seemed to be the main options. Are they the same? What’s the difference?
Big bucks and barriers to access
Price comes into it of course, and it ranges between $100 and $200 per session. It doesn’t seem like much for health care, but for many people this is an out-of-pocket expense. If you’re lucky, you’ll have some benefits, but mental health coverage varies widely. While some employers supplement coverage or provide different ways of accessing care, other programs come with fee limits or caps on the number of sessions.
If we consider the distribution of wealth in this country, we know that if you are part of an ACB community — in fact, part of any racialized community — you have less. Less income, less savings, less access. Actually, it sometimes feels as if the only thing we have more of is unemployment.
Adding to the cost is the fact that therapy is rarely a one-and-done process. You must engage, build rapport with the right therapist, and incorporate therapy into your regular life over time. Some studies suggest 12-16 weekly sessions, though in practice many therapists and patients prefer more, perhaps six months and 20 to 30 sessions. The full 12- to 30-week range translates to $1,200 to $6,000. That’s hardly small change. But there’s also another question: How do you decide what price will deliver the right service for you? Do people think of therapy the way they do wine: The more you pay, the better the therapist?
It leaves me wondering what happens if cognitive therapy isn’t enough. What if my son needs a prescription? Do I start the search for that rare beast — a family doctor — or do I look for the even more elusive psychiatrist? How will I help him cover the cost of medication?
I keep reminding myself that at least he had the confidence and comfort to ask for help, which is often the biggest hurdle to accessing care. But this is far from the case with many ACB families. Beyond economic constraints, they face lots of barriers to accessing mental health care — not the least of which is being discouraged by others’ misconceptions about mental illness. These fallacies include things like ‘mental health support is for people experiencing severe mental illness, not someone trying to deal with emotions or improve the quality of their lives’; ‘mental health problems will get better if you just leave them alone’; and — my personal favourite — ‘Black people who seek professional help have less faith in God’. There’s nothing like the added burden of cultural and emotional guilt when looking for such help. It all seems so complicated. The act of finding the right support is challenging for everyone, but doing it through an ACB lens can feel overwhelming.
Not black and white
Fortunately, people like Nicole Franklin, a Black therapist who believes representation in mental health matters, have started to create the paths we need to do so. Her clinic, Live Free Counselling Service, provides therapy and resources to members of racialized communities in Toronto and the Greater Toronto Area. For those outside Toronto, she provides information on Black-licensed social workers and therapists from across Canada who also practice under a trauma-informed, culturally responsive, and self-care-first lens.
While she advises that the “best time to go to therapy was yesterday,” she also cautions that “therapy is not a quick fix.”
Franklin suggests seeing a therapist once every week, month, or quarter (if you’re able), while understanding that affording a therapist, especially seeing one on a regular basis, can be a financial barrier.
Some clinics set no mandatory fees for service, while others can offer significantly reduced rates, if you are open to seeing a therapist-in-training (usually, a graduate student in psychotherapy or a counselling student completing practical hours for their internship). Other clinics can even adjust fees based on your current financial budget or income, whether you’re employed, in school, or between jobs.
Franklin also recommends due diligence when seeking services from any mental health professional. “Don’t be afraid to ask your therapist questions about their experience, and how they work with certain issues.”
Other areas you might ask about to help determine whether a particular therapist is right for you and your situation include their counselling education or training, service fees, professional values, personal beliefs, and overall therapeutic approach.
Not all client-therapist relationships work out the first time. So it may take a few tries before finding the best solution. According to Franklin, “It’s OK to end a therapeutic relationship that’s not a good fit, no matter what season of life you’re in.”
Some suggestions
My son’s dad and I help support his mental health journey. We give him what he needs financially and emotionally. But if we begin to falter, we are lucky to have a rich network of knowledgeable people to call on for support. If you or someone you know is tackling the challenge of finding therapy without that kind of help, consider the following advice from Franklin.
- Look for a counselling service or network that subscribes to trauma-informed care.
A trauma-informed approach or TIA recognizes the link between trauma, violence, and negative health outcomes. TIA aims to enhance feelings of empowerment, resilience, and safety to help clients with a history of trauma (or who are experiencing traumatic events) take back control of their lives. See the trauma-informed care fact sheet on this holistic health care practice. - Consider a therapist who holds anti-oppressive values.
Anti-oppression psychotherapy helps clients reduce the effects of feelings and experiences related to trauma and violence so that they become empowered through the therapeutic healing journey. - Seek a therapist who deals with the issues you’re working on.
Establishing a client-therapist connection on common ground will help put your relationship on a stronger foundation. This is especially true if you’re meeting your therapist in a virtual setting. “If doing online therapy,” Franklin suggests, “consider if you might have another safer, private space to regularly engage in open and honest conversations.” - Shortlist and pre-interview therapists you’re considering.
“Look online and consult with more than one therapist — it’s like finding a relationship. You often need more than one date to find a good connection.” - Find a mental health provider who has received cultural competency or implicit bias training.
Do so if you’re unable to find an appropriate Black therapist in your neighbourhood or online.
ACB and BIPOC therapy resources and counselling services to consider
- The Black Therapist Collective is a team of Black therapists in Ontario with networks across Canada. BTC also provides the Black Mental Health Fund, a donation-based resource offering subsidized services on a sliding fee scale to assist people in need.
- The Black Therapist List is a directory of professional Black counsellors, life coaches, psychotherapists, psychiatrists, psychologists, and social workers in Canada and the U.S.
- Healing in Colour offers a directory of BIPOC therapists across Canada who are committed to honouring their Statement of Values, which includes an anti-oppressive approach.
- Psychology Today now lets you search for Canadian Black therapists based on your postal code.
- Therapy for Black Girls, while headquartered in the U.S., this resource offers a searchable directory of virtual and in-office Canadian therapists based on your postal code.
Related articles in The Catalyst
Rallying While Black
Black Like Whom? Why We Use ‘ACB’ Over ‘Black’:
Fabiola’s Story
MHCC resources
Shining a Light on Mental Health in Black Communities
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Dil Ba Dil (heart to heart) is one of several support programs for newcomers. It is part of ABRAR Trauma and Mental Health’s approach to complex and culturally informed care.
“I want people to develop their own perspectives on healing,” says Abrar Mechmechia, while looking to the future of ABRAR Trauma and Mental Health Services. She is thinking about where her organization could be in five years and reflecting back on her lived experience while training as a counsellor in 2011 as the war broke out in Syria. For Mechmechia, healing can work in many ways in terms of shifting perspectives — it’s an ongoing complex process that is different for each person.
This no-one-size-fits-all approach to newcomer mental health has shaped the dozen or so programs ABRAR has offered since its affordable fee-for-service work began in 2020. Mechmechia, who is based in Hamilton, now applies her experiences to co-develop its trauma-informed programs, including Dil Ba Dil (translated from Afghan proverbs and poetry as heart to heart), which launched in the fall of 2022.
The pilot project uses an early intervention model to help Afghan women that are new to Canada heal and thrive in their chosen communities. The program includes art-based mental health supports, along with group gatherings that enable them to share experiences and shine as they integrate and adapt to unfamiliar circumstances.
As one participant describes it: “This program relieves a lot of stress and makes me happy to live in Canada. Our facilitator, she’s awesome! She speaks so well, that you start to feel that you are valuable. You know there is someone to help you. I can speak for myself and there is someone who will listen.”
Afghan mental health advocate Shabnam Mahboobi leads the Dil Ba Dil program, which is facilitated by qualifying psychotherapist Vida Ghodraty. Mechmechia hopes to expand the program to include children and other genders.
Some of the ABRAR Trauma and Mental Health team: Aleem Punja and Ramzia Ashrafi (with Future Ready Initiative), Abrar Mechmechia, Lia Khalili, RP (with Bright Start Bright Future Counselling Centre), and Shabnam Mahboobi.
“We want to create more spaces for newcomers to support their mental health,” she says. Currently, ABRAR offers counselling, family coaching, group support, and workshops in English, Arabic, Persian (Farsi), Dari, and Hindi through a team of 12 professionals that includes three master of social work students on placement. These services, which are provided in person in the Greater Toronto Area and virtually across Canada, offer support around self-care, coping, dealing with migration trauma, forming resilient relationships, managing anxiety, and regulating emotions. For example, Brave Space is a support group intervention module for Muslim women impacted by Islamophobic incidents. This year, ABRAR will deliver it in London, Hamilton, Mississauga, and Kitchener, through funding from Islamic Relief Canada. The Friends and Coffee program, piloted with the Syrian Canadian Foundation, also helps Arabic-speaking newcomer women build support networks along with their own mental well-being.
“We know that women are not noticed enough in our own communities,” Mechmechia says. “She runs the house, does the errands, raises the kids, but no one asks how she is doing as a newcomer to Canada, in learning the language, preparing the kids for the future, and all the other daily responsibilities. These women need that space.”
ABRAR also offers training to other organizations on newcomer mental health care and trauma-informed approaches, and they are developing outreach initiatives to those recently arrived from Ukraine.
Trauma after trauma
Topics addressed in past sessions include goal setting, racism and mental health, parenting challenges, and the intersection of migration trauma and the pandemic. As Mechmechia points out, the latter topic is particularly complex.
“It has been hard for many to navigate through the pandemic. You are stuck at home with your own thoughts, trauma, and memories. People are losing jobs and the people they love. It can be a lot to deal with. I personally felt the same. And much of it is out of people’s control.”
This layering of trauma over trauma can be continuous and complex. “Lots of people are in a place where they have many big incidents come together in their life,” she adds. “People have not healed and are dealing with these complex traumas. They feel the stress in their bodies — sometimes more than they acknowledge.”
Among the many ways this can manifest is in sleeping problems.
“Back home in Syria, I would see children who were dealing with nightmares. They really live with the symptoms. In the past, I worked with recent newcomers on their trauma. They came, they established themselves, and then, after five years it started showing. Kids that came to Canada from Iraq started showing issues 10 years later with more complex symptoms. I believe that the outcomes of the pandemic have not yet shown up.”
According to “Social Determinants of the Mental Health of Young Migrants” — a recent European Journal of Health Psychology study of more than 2,000 adolescents — newcomers suffer more from post-traumatic stress disorder and peer problems, while non-newcomers and non-migrants experience more hyperactivity. Across these groups, discrimination adversely affects all aspects of mental health. Although family support serves as a protective factor, the research points to the need for a tailored and diversified approach to mental health care for newcomers, non-newcomer migrants, and non-migrants, with interventions that foster social support from friends being particularly beneficial.
ABRAR’s own research, which supports this finding, has led them to partner with dozens of organizations across the country on developing programs for people from 2SLGBTQ+ and BIPOC communities, newcomers, and youth with disabilities, in and from care, or who self-identify as marginalized.
In turn, their work with individuals and groups informs the research they produce. For example, with In This Together, a report based on work with 20 youth advocates across the country during the first year of the pandemic, the ABRAR team found that financial barriers, ineffective treatment, stigma, a lack of cultural sensitivity, and challenges with academic support affected the mental health of marginalized youth. The organization hopes to ask policy makers for more investments in early intervention programs and to continue to develop culturally diverse services and providers. ABRAR’s ideal approach would link governments, ministries, and program sectors to put greater priority on funding community-based services.
Through this work, Mechmechia wants to build a bridge between youth and decision makers. “We want youth to know they are not alone,” she says. In addition, ABRAR has signed on to the Act for Mental Health campaign (led by the Canadian Mental Health Association), which is advocating for universal publicly funded mental health care to improve affordability and access.
As we return to our conversation about the future of her organization, Mechmechia emphasizes the importance of that process. “Vision motivates people to move forward,” she says. “Humans need a goal, and for us, I think in five years we would like to be everywhere in Canada to support newcomers and refugees dealing with trauma on the ground.
“The world is complicated — some people get to live peacefully and calmly. When they don’t get to do that, they don’t see an end. Much like the pandemic, people don’t know when they will be done with the trauma. We want to help people see the ways their experiences can shift their perspective.”