It’s #BellLetsTalk Day, which here in Canada is the one day of the year that people—for better or worse, and sometimes to just bash Bell—stop to talk about mental health. I’m not getting into the Bell thing—it’s a thing.

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What I am getting into is this country has taken the time to pause and reflect. This is awesome. I have seen so many of my friends on Facebook share their struggles and triumphs and stories of living with anxiety and depression; of going to therapy and of choosing to try medication. People who have dealt with these things since childhood, or who are navigating mental health concerns for the first time as adults. To all of you who have shared your stories—today or any other day—I am so proud of all of you. Thank you for being bold, embracing who YOU are, and sharing your journey: I hope that it makes people in your world see “mental illness” differently, and see you just the same, because you are. You are important and your story is important. Every damn day, not just today—the highs, the lows, your story is important. Every. Freaking. Day. 

I am right here with you.

ADHD is a neurodevelopmental disorder, but one that is also considered by some—including the Canadian Mental Health Association—a mental illness. Like depression and anxiety, ADHD is caused by an imbalance of chemicals in the brain, specifically neurotransmitters.

And I’ll be honest, there are days that I can’t believe that. There are days that I see attention deficit disorder as a blessing or a gift or whatever cheesy, cliche thing people say and how could that be a mental illness? How could it be something that isn’t awesome? Days that I am on my A-game, that I have witty remarks that come out the right way, and that words just fly out onto the page in front of me, and days that my energy is exploding out of me in a way that actually feels good.

Except, more often, there’s the flip side to ADHD. The self-doubt, the feeling that I can’t do things right because I have failed to meet expectations so many times, the times I cannot focus enough to figure out the simplest of things—or even when I can focus, there is information my brain simply can’t process. There are the times that not only can I not understand why I am reacting to things the way I am, but also that it is a tidal wave: my feelings just crash over me and I can’t figure out how to just stop this and react how I know is “normal”. It helps—a bit—knowing that this is common for kids and adults with ADHD alike, that we legitimately feel things more intensely and for longer than other people do [1]. But it only helps after the fact. There are the times I hyperfocus and fail to get anything done that I actually need done and only let myself down; others that I again feel like I’ve failed someone else. The words “I forgot,” or “I’m sorry,” are not less true when they come out of my mouth: I mean it. But I get it: it’s hard to accept, again, when you’ve heard it before, because it looks like carelessness. I don’t blame my ADHD—I blame myself, because ADHD and I coexist. I am not my diagnosis, but I cannot separate from it, either. ADHD isn’t just about academics: it’s about life. And it sucks when your failures or shortcomings are not for lack of trying, they are just because my brain is not wired that way.

But here’s the thing. It’s so much better than it was. It’s better knowing that there is a reason why some things are like they are. ADHD is not an excuse, but it is an explanation, if even just for myself sometimes. It’s better knowing how to figure out strategies that work rather than just feeling like I’m stupid. It’s better knowing that this is how I am wired, and that is okay

My first appointment with my psychiatrist back in 2013, she did not say it but she clearly made a note that I appeared anxious. I started medication for ADHD the next day. When I met her again a month later, early in the appointment she commented that I seemed less anxious even just on a very low dose of Concerta, and asked if I had felt anxious before. I told her that I hadn’t, but that things just “felt better” inside me. It was hard to describe—she understood. Every appointment I have seen my psychiatrist she actually asks about side effects. She asks how things are going. She asks how my mood is. Every time. Because she knows the statistics.

Research states people with ADHD are at increased risk for mental health issues: nearly half of people will experience an anxiety disorder, well over a third will deal with a mood disorder like depression, and 15% will develop a substance-use disorder. [2] However, if ADHD is managed correctly, be it through whichever combination of exercise and therapy and medication and eating well-ish, these things can either be caught early and treated early—maybe even be prevented. Maybe.
I am fortunate, I do not currently have any co-existing mental health concerns. That doesn’t mean that it hasn’t, won’t or can’t happen.

ADHD medication doesn’t give a person with ADHD any special ability to concentrate. I probably still focus less well than most non-ADHDers on 72 mg of Concerta a day. I don’t know because I’ve never had a non-ADHD brain. But do I feel better? Yes. Even though all of the above that I still struggle with. Part of it is because of medicine, but part of it is simply knowing what I am working with, knowing that other people experience this, knowing other people get me.

So, Canada.
You spoke.
I spoke.
We “talked”.
Now, don’t shut up just because Bell does.

Because we need this conversation. And we need the conversation to go further: to ensure mental health care is easily accessible—and affordable—for all Canadians. To make therapy with high-quality therapists affordable and accessible*. To ensure that services are available on demand, when people need them—weeks, or months, or years later. As a Canadian, healthcare for your body comes with the package—its a right. But care for your brain? It’s still on the table. (Which is closer than it’s been for a long time.) Stories are important, but so is access to care.

We need this conversation because we need every Canadian to feel confident they can be supported when they choose to share what they are facing.

Because my diagnosis is NOT about whether or not you believe it exists or not. It exists.

And we are living, breathing, singing, dancing proof that WE EXIST.

*Affordable and accessible therapy, to me, means to make therapy that is not income dependent or not something that is dependent on (awesome) charitable organizations like Aulneau, or educational institutions like the University of Manitoba Psych Services Centre. I’m uninsured, and if I can’t afford insurance, I can’t afford a $150 an hour therapist: which doesn’t mean that I should (or in some cases can) just wait longer.

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I started this on Sunday. You know, ADHD. Point is I am finishing it and I still did the plank and meditated. BOOM. (Mostly.)

The thing with ADHD is that unless you have it, it’s hard to totally understand. Or as the folks at ADHD U say, “If you don’t got it, you don’t get it!”. While ADHD is variable and no two of us are alike (like, of course, with just about any diagnosis), community helps.

The ladies—especially our team of administrators—at Smart Girls with ADHD are equally good at providing empathy and laughing at ourselves for the things we do… At volumes that only ADHDers seem to do those sorts of things. Even when I am not posting or responding frequently, if I do something that the other ladies will relate to—usually funny, sometimes frustrating—I will most often pop over to the group and share it! It’s fun to see the comments come in of other girls’ stories from the preceding few days saying “I get ya!”

Community is important to know that you may be different from most people around you because of ADHD or LD, but that you are not alone. I shared a blog post earlier this month, and I always don’t know how to feel when I get a response like this:

Mostly, I am overjoyed that someone knows that we get it. However, there’s still a part of me that still hurts because we are so enthusiastic to find people that get it because of all those who don’t get it. This, though, is why community is so important—and for me, an important part of self-care, one that I can choose to access more when I need it, and less when I don’t. Because when nobody gets it? The ADHD community—whether that’s our Smart Girls (or the Smart Girls admins), the #ADDcheckin tweeps, or just sending off a message to a friend who I know gets it, like Aaron or Jess if I’m needing to be a tad less public about the whole thing.

I’ve said it before about chronic disease, but it really applies to ADHD too. Find your people, your community. The ones that get you. Even if they’re halfway across the country or the continent or the world, my little neurodiverse, ADHD community is so important to me to have—to know that even in my brain’s quirks, other people have the same variation of normal that I do. And just having that safe space to share or rant or whatever is so important, and often reminds me that yes, patience is important and that applies SO MUCH to being patient with myself, too.

i won’t be satisfied with okay
and I can’t be okay with alright
so point me to the edge of life,
i’ll stand up on my toes
stretch my fingers out to there
and bring it back here.

because it’s too important,
for us to forget
we’ll unify our thoughts,
God will hear and save
God will hear and save us.

all together standing up on our toe[s],
we’re reaching for a freedom that they don’t know
so catch it as it pours out, we know what we need
don’t get tired when you’re running back to show them.

–okay, flyleaf

 

My friend Chris often posts pictures of “how might we” questions he has written down in a notebook—a practice I emulated last week, and used to prepare for my conversation with Richard on Thursday.

I didn’t reference the notes once—I didn’t need to. While we weren’t too sure of where we were going—and found ourselves in many different directions!—Richard, more concise than myself, was able to summarize our varied of conversation in a single tweet.

how might we: encourage / move / allow story / gradually / better / encourage / become / embrace / bridge / explore / transcend.While writing this, I fired down a string of questions into a black Moleskine, attempting to pare down the 835+ words that have been strewn about thus far.

encourage.
move.
better.
become.
embrace.
bridge.
explore.

question.

The most dangerous phrase in the English language is, “We’ve always done it this way.”

—Grace Murray Hopper

I question everything. I kind of think that refusing to question everything means that we become, and remain, stuck—we do not grow, and thus, we do not change.

How might we encourage change? and at that, the type of change to build connection through story—to build community through connection. To encourage the asking of questions rather than the acceptance of the familiar.

 

i wont be satisfied with okay / and i cant be okay with alright.

 

During our conversation, Richard noted that many people don’t know what their story is.

How much do we know our ambition, our purpose, our goals, if we don’t know our own stories? The stories we are creating, writing, LIVING, every single day.

Knowing our stories though, like living them, doesn’t come passively, or with passivity—it comes with being fully alive in them, and in sharing them. How much are we living passively because we don’t have enough opportunities to share our stories with our communities? And if we do, what are the barriers to sharing? Do we, perhaps, as a society, feel as if we cannot open up enough to ask questions of our own beliefs, experiences, our stories, by intentionally communicating these things with others?

We talk with one another every day–do we really engage, or do we just talk? Are we really having a conversation, or are we sidestepping the brokenness right in front of us? Are we swerving around the questioning, the longing, the creating, the uncomfortable, the fucked up? (Are we using this agility to deke around that fucked up even exists?) That problems exist right in front of us, even if they are separate from the base of Maslow’s pyramid? That no problem, no experience, no struggle or triumph, is greater or lesser than another?

it was a beautiful letdown when You found me here,
yeah for once in a rare blue moon, i see everything here,

i’ll be a beautiful letdown, that’s what i’ll forever be
and though it may cost my soul, i’ll sing for free.[…] i don’t belong here, feels like i don’t belong here.
i will carry a cross and a song where i don’t belong […]

we a beautiful letdown, painfully uncool,
the church of the losers, the dropouts, the sinners, the failures, and the fools.
what a beautiful letdown—are we salt in the wound?
let us sing one true tune.

–the beautiful letdown, switchfoot.

the church of the losers, the dropouts, the sinners, the failures, and the fools is where i want to belong. Messing up means we tried.

In the context of faith: Do we worship in this same way? One-sidedly? Aiming for perfection that doesn’t exist—and doesn’t matter? In the church, or in any community, do we have—or how can we facilitate—a conversation around story?

Around sharing our experiences, our downfalls, with freedom from fear.

The stories that make us the people we are.

 

I got on the bus and put my earphones in—my iPhone shuffled to Okay, above. I repeated it five times.

‘cause it’s too important for us to forget
[…] so catch it as it pours out,
we know what we need,
don’t get tired when you’re running back to show them. 

So, let’s start here in the comments, or e-mail me

what’s your story? 

I was really excited tonight when my friends at the Asthma Society of Canada shared an article entitled Six research developments in asthma via Healio. I think it’s important for patients to know what’s going on in research, and hopefully, the more people see what’s going on, the more people feel the desire to volunteer as participants in asthma research studies (like the Severe Asthma Research Program) or clinical trials that they are eligible to participate in.

The disappointing reality, though, is these “research developments” really contain little new knowledge. Some of these facts have been circulating around for a few years if you’ve been paying attention—and others, well, while I have a larger knowledge base on asthma than the average person with asthma [and, admittedly, some medical professionals], I am not a medical professional or researcher, and . . . I could have concluded the same thing, just less scientifically. Some others, well, point six for example? I knew from the title I wouldn’t understand, so I am admitting defeat on that right now.

Note that while I’ve linked a lot of studies here, I tried to keep my explanations basic [because, that’s the only way I actually understand].

 

1. “Asthma inversely linked to lung cancer.” Allegedly, the more atopic diseases one has, the lower risk that they’ll develop lung cancer—asthma was the least protective compared to eczema [middle-ground] and hay fever [most protective benefit—I actually want to put “benefit” in quotes.] So the finding that perhaps there is a [weak?] correlation between the inflammatory/allergic disease process and cancer is interesting, but, is it something that I can apply to improve my own outcomes? Nope, not really.

2. “E-cigarettes may worsen asthma, respiratory disease among youth. You’re joking, right? Inhaling a nicotine based chemical vapour might cause asthma symptoms? “Among youth” is also the key phrase here—for only the reason that it should be “among people”. I react to chemicals–from perfume or cologne, to body lotions, to Lysol—with exposure, never mind with purposefully inhaling stuff.

3. “Asthma relapse more likely after use of short-acting beta-2 agonists.” A beta-2 agonist is just the fancy term for a bronchodilator [a medicine that widens narrowed airways]; short acting ones [SABAs] are the common rescue inhalers that work within a few minutes and last for 4-6 hours. In more detail, the study reports that if SABAs are used prior to going to the hospital, relapse—or what some hardcore asthmatics would call rebounding—is more likely to occur. I actually need to quote this one out here because it’s so ridiculous:

Children who took short-acting beta-2 agonists within 6 hours before hospital admission and the presence of retractions on physical examinations increased their risk for relapse after the treatment for asthma exacerbations, according to data.

Obviously the best line is “according to data” (which you can find here—the full text, however, costs $30 despite that I am on my university’s database network—so, I, possibly like the authors of this article, won’t be digging any deeper). Given the line about SABA use, clearly this is useless data: if a person has an inhaler accessible, why would they not be using it? That’s what it’s for.
We get a bit smarter when we note the “presence of retractions” (decreased ability of the lungs to move air causes the muscles attached to the ribs—allowing the space around the lungs to become larger or smaller [more here on respiratory mechanics]–start working overtime, pulling inward to compensate for respiratory distress. Like I said, I’m not a scientist… but, I’m pretty sure recovering respiratory distress pretty automatically qualifies you to rebound. That, or tapering from the high dose steroids they suggest as a positive measure in preventing relapses. The final point, providing a written plan, is clearly a good one, and if anything is being done to be useful, probably more psychosocial research should fill the gap for what medicine is having trouble providing.

4. “Antibiotic use in first year of life associated with asthma by age 3.” I was diagnosed with asthma in April 2008. Like any sixteen-year-old, I read Wikipedia. Know what Wikipedia told me six years ago? That I had a higher chance of developing asthma because I was a) given antibiotics early in life, b) born premature, c) born by caesarean section. Wikipedia revealed this to me in 2008. Nope, I wasn’t diagnosed when I was three [or seven] but obviously, this is hardly new. If you’re already tired of my links and didn’t click through, that first abstract above [Droste et al.] is from 2000.

5. “Vitamin D3 treatment did not significantly affect asthma patients with low vitamin D levels.” This one is a newer area of exploration [but certainly not as new as 2014…], and to its credit [in my books, at least], its potentially tangible to patients. Initially, studies suggested that vitamin D might alter immune response to some degree (2007 article here for those smarter than me). While the article cited by Healio bases its notation on a single study, a meta-analysis and systematic review of the literature (Zhang, Gong & Liu, 2014) note that among 10 studies, while asthmatics were more likely to have vitamin D deficiency than control subjects [non-asthmatics], their vitamin D levels didn’t alter their asthma symptoms. Thus, what I take from this, is I can continue to avoid the outdoors as much as I want. [Kidding :).]

6. Hardcore science. The sixth point is far too complicated for me to even begin to discuss, so you smart people who understood that 2007 article up there on vitamin D, can please feel welcome to report back to us about elevated urinary diclorophenol and asthma morbidity. Because, like I said, not a scientist, and that is clearly not applicable to my life.

 

Research is research, and I’m happy it’s being done—but, I am here now. The above findings are not affecting my daily reality, and I’m not sure they’re getting us any closer to doing so.

While a few legitimately new asthma drugs have hit the market recently (primarily biologics like Xolair) I—and most asthma patients—are either using medications developed 30 or 40 years ago, or variations of medications developed in that timespan The medicine every asthmatic should have access to, most commonly known as Ventolin (salbutamol/albuterol in the US), was developed in 1968. Yet, here I am, forty-six years later, still taking this same bronchodilator medication because the alternatives aren’t available, and even if they were, aren’t really proven to be any more effective (Xopenex, to name one, is not available in Canada—levosalbutamol/levalbuterol is alleged to have fewer cardiac side effects, but… at a much higher price, thus, its much more rarely prescribed). Next up as the most-common asthma medicine type? Inhaled steroids—initially developed in, you guessed it, the 1960s.  We’ve had a few more advances in terms of, say, long-acting bronchodilators, but salmeterol (Advair/Seretide/Serevent)—and less dramatically, formoterol (Symbicort/Dulera/Zenhale/Foradil) carry a black box warning of increased risk of asthma related death.  Know what else causes asthma related death? Asthma.

Knowing that my risk of lung cancer is reduced is great, but maybe that’s not so much a “protective effect” but a biased finding as asthmatics [especially lesser-controlled ones] are often asked if we smoke by medical people—thus increasing our chances of smoking cessation intervention if perhaps we do smoke.

It doesn’t change that right now, today, I’ve used four different inhalers to stay feeling decent. Nope, not normal, not magically controlled… but decent. It doesn’t change that I’ve tried most available asthma medications and while the ones I am on now are the best fit for me so far, I still don’t know when that next thing that could be my “wonder drug” could come along—or if it ever will. We still barely know what causes this disease—other than it’s probably a combination of environment and genetics—so how can we even consider having the ability to find an actual cure for this disease? I honestly don’t think we can—and, here’s where my optimism severely drops: I very much doubt we will in my lifetime.

I just hope that next time I see a top six in research developments, that instead of telling me nothing that changes my daily life, that maybe we know what causes this disease and that it’s become preventable. That maybe they’ve developed an accessible system to phenotype asthma (nod to researchers like Dr. Sally Wenzel working on this right now!) and from that, can throw—hopefully new, and not just newly reformulated—medicine at me that will be guaranteed to work.

And even, most simply, that the psychosocial, emotional, and developmental aspects of the disease are addressed and that this knowledge is applied everywhere possible: to promote better patient and community education that’s developmentally and culturally appropriate for every community; to provide better patient-to-patient support—in a way that’s implementable and sustainable; and to ensure people understand their asthma and understand how to self-advocate.

The science is cool, or at least on its way to being cool—the science will eventually be awesome—but even when new ways to manage—or even cure—asthma arise, I know that if I’m still around that I probably won’t be able to trust the process fully if I don’t have a community of people sharing my story, sharing in similar circumstances, alongside me in whatever that undiscovered path might look like to be adjusting alongside me, too.