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Once I suspected that my brain worked differently, getting tests and a diagnosis took time and money that I didn’t have. There are ways we can make the journey easier for others

Illustration by Gabrielle Drolet

Gabrielle Drolet is a journalist and cartoonist based in Toronto.

I spent most of my life feeling like I was barely getting by. No matter how much effort I put in, I was always falling behind, everything just beyond my control.

I couldn’t keep up with school readings. I handed in essays and articles with spelling mistakes, having written them the day they were due. I felt friendships slip away and scrambled to reel them in, answering texts or calling people back weeks late. Even everyday chores spiralled and accumulated, a few dishes becoming a sinkful.

I struggled to keep up with what everyone else seemed to find easy, my friends and peers breezing through the same small tasks that overwhelmed me.

My friends thought this was by choice. They joked that I was the biggest procrastinator they’d ever met, or that I couldn’t be bothered to put in the effort. I spent years believing the same thing – that maybe if I tried harder, something would click into place.

When I came across a thread about Attention Deficit Hyperactivity Disorder (ADHD) on Twitter a couple of years ago, I felt stunned by how many of the symptoms related to my own experiences. Things I’d always attributed to laziness or bad habits – which ranged from being unfocused and disorganized to impulsive and easily frustrated – suddenly had a clear-cut explanation. With each symptom I read, I felt my stomach sink.

Though ADHD aligned itself closely with my experiences, I closed Twitter and tried not to think about it. Because of the stigmas surrounding the disorder, I convinced myself it couldn’t be an option for me; that I was looking to excuse my own bad behaviour. I continued to scrape by, even if barely.

Then, about a year and a half ago, things finally fell apart.

In September of 2020, I started a master’s degree online, the pandemic confining me to a little apartment I shared with my then-girlfriend in Nova Scotia. The lines between school, life and work became blurred, everything happening in the same few rooms. Focusing became more difficult, the sound of my partner’s Zoom meetings and conversations a constant distraction. Come October, a lack of structure and routine proved detrimental: deadlines slipped past entirely; I lost touch with friends and family; I was in a constant state of anxiety, unsure how to regain control. I reached my breaking point, and it became clear I had a problem that ran deeper than procrastination.

Realizing I likely had ADHD was hard. What followed was much harder.

This 3-D illustration, made with an MRI technique pioneered at King's College London, shows altered connections in the brain (in yellow) that are important for executive function in people with ADHD. Symptoms can include restlessness, low tolerance for frustration and trouble organizing tasks.PROFESSOR MARCO CATANI, KING’S COLLEGE LONDON/Handout via Reuters

People often joke that the process of getting diagnosed is one of the most unkind things you can put an ADHD sufferer through. When a disorder is characterized by a difficulty self-managing and following through on tasks, an assessment process that requires jumping through multiple hoops can feel too overwhelming. At the slightest inconvenience, it feels easy to give up, as I did for several months.

When it came to accessing treatment, I wasn’t sure where to start. Most of the advice online was to talk to a family doctor, but, at the time, I didn’t have one. (This meant a referral to a psychiatrist was a tall order, too.) A series of dead-ends pushed me to call private psychology clinics in Halifax. One said an assessment would cost roughly $1,600; another quoted $1,400. Even if I could afford that (I couldn’t), diagnosis wouldn’t guarantee medication – only validation, and maybe an action plan with next steps. Since psychologists aren’t able to write prescriptions, I’d have to bring my assessment to a walk-in clinic and hope they’d take me seriously, adding another step to an already difficult process.

These barriers felt insurmountable. In the months that followed, I felt a constant mix of anger, frustration and self-pity every time I struggled with a task. I knew what the problem was – I just didn’t have the resources to address it. It was crushing.

I wasn’t financially stable enough to book an appointment until three months later, in January, when I finally reached out to those private clinics again. It took until April to get diagnosed, and May to get medicated.

I didn’t realize it at the time, but my situation was far from unique – right down to when and how I realized I had ADHD. A U.K. paper published in August found that adults with ADHD had a harder time adapting to a locked-down life than others, stating the pandemic “exacerbated the core symptoms of ADHD and co-occurring difficulties.”

As people lost access to the systems and coping mechanisms they relied on, whether they be in-person workspaces or structured schedules, symptoms became harder to ignore. Doron Almagor, a psychiatrist who works at The Possibilities Clinic in Toronto – which diagnoses and treats ADHD in people of all ages – says he’s worked with many adults over the past year getting assessments specifically because of COVID. “They may have been able to cope with their ADHD symptoms prior to the pandemic,” he says, “but it’s kind of shifted the context of their life to such a point that they can’t cope.”

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While the pandemic has acted as a catalyst for people to come to terms with having ADHD, it seems to play a small part in a cultural shift that was already happening. As we talk more openly about mental health and disability, particularly on social media, it’s become easier for adults to learn about the disorder and realize they might have it, too.

For many people, Twitter or TikTok are the places where they first learned about adult ADHD and its nuances. On both platforms, creators post resources, information or stories about their own experiences with ADHD, trying to spread more awareness of what it actually looks like in adults.

Though my lightbulb moment came from Twitter, TikTok is especially interesting here. Content about ADHD is hugely popular there: videos using the hashtag “ADHD” have a combined 8.7 billion views, and creators who talk about it have millions of followers. TikTok also has an impeccable algorithm – it’s great at picking up what you’re watching and sending more of it your way. Once I realized I might have ADHD, TikTok kept recommending videos on the topic, making the reality of my situation harder to ignore. Every time I opened the app, I was faced with a new creator describing symptoms I didn’t even know were symptoms.

The video format feels more personal than a tweet, too – seeing someone who looks like you describe experiences like yours can help you come to terms with the possibility of an undiagnosed condition. This visibility is valuable when it comes to dispelling stereotypes about what ADHD looks like, which are abundant.

David Teplin, a clinical psychologist whose areas of focus include adult ADHD and clinical assessment, explains that many of us still associate ADHD with rambunctious, energetic young boys. It’s a stereotype that’s been around for a long time, strengthened by the history surrounding the disorder.

“ADHD has been described in medical writing since the 1700s, so it’s not a new concept,” Dr. Teplin says. “I think part of the confusion, possibly misunderstanding, is that ADHD, up until 35 years ago, roughly, was seen really as a disorder of childhood, in which people outgrew it.”

Of course, anyone can have ADHD, and it doesn’t always look like hyperactivity. However, the stereotype has a tangible impact. Many of us have a hard time wrapping our heads around the fact that adults can have ADHD at all – especially those who appear outwardly professional and organized, or who don’t look the way we expect someone with ADHD to look. White boys are diagnosed at higher rates than anyone else, with people of colour and girls often getting left behind until adulthood.

Despite the cultural shift that seems to be happening – wherein our understanding of ADHD is moving away from old stereotypes – our health care system feels stagnant. Accessing treatment can be a confusing, outdated process, and, ironically, arduous for those who have trouble following through on things.

“It’s not uncommon that somebody calls me and says, ‘Doc, I’ve been meaning to call you for two years. I just didn’t get around to it,’ ” Dr. Teplin says.

In Canada, there are several routes through which someone can acquire an ADHD diagnosis and/or a prescription. In some cases, family doctors who are well-versed in developmental disabilities and who are comfortable assessing ADHD will directly prescribe to their patients. Others might refer a patient to a psychiatrist – specialized physicians who are funded by provincial health care, but for whom there is generally a long wait list.

While general practitioners are the most logical first step, family doctor shortages are a common problem across the country. This is deeply felt in parts of Atlantic Canada, with people often waiting upwards of six months to see a GP or nurse practitioner.

Wait times to see psychiatrists are so long they often push patients to pay out-of-pocket for private clinics. Dr. Teplin says he hears from people who weren’t looking to see a psychologist, but end up reaching out because otherwise they’d have to wait anywhere from six months to a year for publicly funded treatment.

Long wait times aren’t the only barrier to care. Because of those stereotypes mentioned earlier, health care practitioners can hold outdated beliefs with clear effects on their patients – particularly those who aren’t men. I spoke to patients who reported being dismissed by their physicians when bringing up ADHD at appointments, their practitioners not even entertaining it as an option. While some were told they couldn’t have ADHD because they’re too successful or good in school, others were diagnosed with other problems entirely.

It’s not uncommon to be diagnosed with depression or anxiety in place of ADHD, an issue exacerbated by the fact that anxiety and depression often coexist alongside ADHD in women.

“When you take family physicians who are trained in anxiety [and] depression, [but] are not trained in ADHD, they will naturally misdiagnose or only diagnose the anxiety and depression and not the ADHD,” says Heidi Bernhardt, the director of education and advocacy for the Centre for ADHD Awareness Canada (CADDAC). “So we end up with women who were treated for those disorders unsuccessfully, sometimes for decades, before we diagnose ADHD.”

Even in situations where people have well-meaning family doctors, diagnosis can still be hard to access based on the resources available in a geographic area. Oksana Preachuk, a recent university graduate living in a small Manitoban municipality, has been actively trying to get assessed or treated since August, 2020.

She started by turning to her family doctor, who was supportive, but didn’t feel comfortable prescribing anything. She then tried turning to psychiatrists, cold-calling clinics but never able to book in for an appointment. From there, she reached out to a nurse practitioner and a mental health institution in nearby Winnipeg, but she was too far outside of the catchment area – meaning, based on where she lives, she doesn’t qualify for treatment in the city, but in a small municipality there’s nowhere for her to turn.

“I’m not sure where to really go from here. I almost feel like I’ve exhausted all my options, but at the same time, I don’t know what all of my options are,” Ms. Preachuk says.

For now, going to a private clinic doesn’t seem like an option. As a young adult without good health insurance, Ms. Preachuk can’t afford to pay out-of-pocket for an assessment, and doesn’t know when she will be able to.

“It’s certainly disheartening to go to a bunch of different people who are supposed to be able to help you and who say that they’re here to help you, but then have it go nowhere,” Ms. Preachuk says.

Of course, for some, the health care system works the way it should: They’re treated appropriately by their GPs, easily referred to psychiatrists, or able to comfortably afford care from psychologists. In some cases, being a student can also ease the process, with university health services providing assessments. However, the system shouldn’t be so hard to navigate that some adults stay undiagnosed for months or years.

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While diagnosis isn’t a cure-all for people with ADHD, it has clear, positive effects. ADHD commonly coexists with other mental problems, and can even cause or exacerbate them. Studies have shown that untreated ADHD can worsen comorbid disorders, while diagnosis and treatment can curb them. As an example, early treatment and medication for young people with ADHD has been proven to reduce substance use disorder rates later in life, which is vital: studies show that 23 per cent of young adults with substance use disorders also present ADHD symptoms.

Formal diagnosis is important for another reason: it’s often the key to using accessibility services in schools and workplaces. These services can range from extra time on exams, to accessible technology or quiet places to work in an office. Writer and producer Dev Ramsawakh, who was able to get medication and treatment through their family doctor, never got formally diagnosed, which barred them from certain services at the University of Toronto.

“The school did actually need me to get a diagnosis of some kind in order to access some of the more technological accommodations,” Mx. Ramsawakh said. “I pretty much never really pursued the official diagnosis because of the cost it would take.”

The benefits of being diagnosed can be as simple as feeling validated, too. When my psychologist finally told me I had ADHD – six months and $1,400 after I’d first looked into getting diagnosed – I was flooded with a mix of vindication and relief. I apologized for crying on the Zoom call, overwhelmed with emotion, and my psychologist waved a pixelated hand through the air.

“This happens all the time,” she said.

I had spent years blaming myself for my difficulties with work, school and even everyday tasks; years thinking I was a bad student, a lazy journalist, a poor friend. Having an explanation and a way forward meant everything.

Treatment can look different for everyone. For me, it’s a stimulant in the morning and a series of coping strategies I use throughout the workday: to-do lists, schedules, timers. I’m also working on being kinder to myself, more patient and understanding when I’m struggling more than my peers.

I’m sure there were other, less pricey ways for me to get diagnosed, but I was at a point where I couldn’t wait any longer. I’m lucky I was able to pay out-of-pocket, but that’s not a reality for everyone – and money shouldn’t be a barrier, nor should geography or anything else.

As more adults realize they might have ADHD, we need better systems in place for accessible treatment. Our culture is slowly shifting toward more understanding and compassion for people with ADHD – our medical care should reflect that.

ADHD isn’t what you think. It is what I live with

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