ADHD and me: on mental health.

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.

patient inclusion: how long overdue?

I’ve been on this huge audiobook kick the last week. As in, since December 12, I have read 8 books. (This is what happens when I finish my work early/do not have enough work to do. Honestly, this is fun but I’d rather be writing.) Maybe I’m just trying to hit my 40 book goal for 2016—I am at 26. The answer seems like yeah, right.

Through the Centre for Equitable Library Access program (CELA), Canadians with print disabilities can access a variety of audio or braille books on loan, for free. Most of these books are recorded by the CNIB (Canadian National Institute for the Blind), and as such, Canadian authors are well-featured, and I’ve actually been able to find a book on goalball in the collection. Following Margaret Trudeau’s Changing My Mind, I read Invisible: My Journey Through Vision and Hearing Loss by Ruth Silver.

On attending a conference about promoting independence for those who are both hard of hearing and visually impaired (Deafblind or deaf-blind), she writes:

There was only one speaker who was deaf-blind.
—Ruth Silver in Invisible: My Journey Through Vision and Hearing Loss 

Immediately, I rewound. I listened again, and shook my head.
Typical.

I do not know for certain what year Ruth Silver attended this event in question, of which she wrote “There was only one speaker who was deaf-blind,” prior to starting the Centre for Deaf-Blind Persons in Milwaukee in 1983. She published the memoir in 2012. In any event, that is twenty nine years prior to the book’s publication, and thirty three years ago as of 2016.

I do know that not much has changed.

In mid-November, I had the opportunity to attend an event in Toronto, one that had patients in the title no less. While matters were not “solved”, in response to Twitter-vocalization regarding true patient inclusion by Bill and I, the organizer reached out to us via e-mail following the event to “address” our concerns. The crux of the matter is, even an event that was meant for patients, did not feature a single patient speaking on the matter at hand. While you can scroll back in my Twitter feed or contact me directly to learn more, I’m not going to give nods to the event itself. One, because as much as this event frustrated me, I want to believe they had good intentions even if they were way off the mark, and two, because I believe that these nonprofits are likely doing their patient communities good: it is not up to me to speak on the actual work of these groups. (Disclosure: They paid my travel and expenses, they being pharma, I presume).

So here it is again. There was not one single patient on the agenda. I don’t want to hear any of that bogus “we are all patients” crud (nor that taxpayer BS)—yes at some time we are all patients. However, there are those of us who are chronic patients, reliant on medicine to stay healthy and/or alive.

How sad is it that as this uprising, somewhat-bright, restless collective of humans craving better, how is it we have not gotten this straight in thirty three years?

I wish I knew. Documents like the excellent Patients Included Charter for Conferences get us closer. But they need to be implemented, advocated for in themselves. And we need Canadian patients to be in on, in for this movement, too.

It’s been 33 years. And we’re only starting to figure this out. The uprising is bottom-up, not top-down. I mean, or the reverse, depending on how you view who is in power.

so must we demonstrate
that we can get it straight?
we painted a picture
now we’re drowning in the paint
let’s figure out what the fuck it’s about
before the picture we painted
chews us up and spits us out 

sick of painting in black and white
my pen is dry, now i’m uptight
so sick of limiting myself to fit your definition.

redefine.

—redefine, incubus

We are well overdue to break the typical.
Probably, well overdue by well over 33 years. 

[catching up] adhd fact friday #3 [21/31]

Week Three Fact:
adhd fact fridayADHD sometimes comes with the opposite of being unable or having difficulty focusing. Hyperfocus is just what it sounds like: intense periods of focus, which make attention deficit disorder all the more confusing.

Yes, it seems paradoxical. Yet hyperfocus is very real to many ADHDers, myself included—ADHD is an “attention regulation disorder”—as difficult as it can be for us to focus on tasks that are boring or not mentally stimulating, it can be equally difficult for us to redirect our attention from something that is fun or interesting.

Hyperfocus can be the saving grace of people with ADHD with a deadline ahead of them, or a massive obstacle when we find something fun or enjoyable… and should be doing other things. However, sometimes we get so sucked in that it can be extremely hard to break our focus. Even people talking directly to us might not be enough to interrupt us—the polar opposite of what people perceive as our attention deficit selves.

For myself, I think hyperfocus is the reason I could read book after book when I was younger, especially when I had nothing else mentally interesting to do: if the book was interesting, that was the only place my attention went.

Day 21 Challenge Update

Plank: 155 seconds while on FaceTime with Kat. Which made it easier, actually.

Meditation: I completed the Bite Size Meditation series on Smiling Mind.

no, actually, you aren’t having an “ADD day”. [13/31]

There’s a difference when an ADHDer says “it’s been one of those ADHD days”.

This is how I started writing this post, and then realized, remembered the fact that—frustratingly—the term “I’m so ADD today” is thrown around like it means nothing.

Yes. I have ADHD every day. But there are some days—like today, when I can just feel the chaos in my brain intensify as the clock keeps ticking—from 6 PM onward because I took my morning Concerta at 6:20 AM and didn’t—again—manage to actually get my afternoon dose into my body. I can feel that difference in how my brain feels. 

The thing is, whether it’s a less-well-managed ADHD day like today, or a more holistically approached day with my ADHD—one where I take my meds when I am supposed to, and get a decent amount of exercise, and get grounded with meditation and all that stuff—I still have ADHD. No matter how I choose to approach it, I still have ADHD, like I’ve had my whole life whether I knew it or not, and like I’ll presumably continue to experience the rest of my life. 

I’m not about to get into the positives/negatives of ADHD. Honestly, it’s great to hear those things being discussed candidly, but it’s also at times a bit overdone. ADHD is just a part of me—at least that’s how I feel tonight.

Why neurotypical people misunderstand ADHD, or classify their five minutes or inattention or an hour of distraction once in awhile as “ADD-like” is that ADHD behaviours are typical human behaviours. It’s confusing, I get it. With ADHD, we experience these things—impulsivity and/or hyperactivity and/or inattention symptoms—exponentially more frequently than people with typical brain chemistry. The difference is that after a non-ADHDer’s hour of distraction or brief lapse into impulsivity or “off day”, they return to a normal level of functioning—they get a good night’s sleep or do something to recharge and they’re back at 100%. 

Everybody’s ADHD looks different—some of us also experience certain symptoms associated with ADHD—or ADHD in general—more severely than others, and we all have different combinations of symptoms.

But a moment, an hour, or even a single a day of these kinds of symptoms does not at all mean that you’re having an ADD day. Because part of having an actual ADD day is knowing that you get to wake up and start all over again, with your same quirky brain. And depending on what factors are at play, who knows what that’ll look like.

I don’t know what non-ADHD life is like. I guess it would probably feel restful to even have one day off—even in contrast to having stimulants on board. Then again, if I just got a day off, I’d probably be bored partway through of normal brain life ;).

My ADHD life looks different every day. And it confuses even me, though you find patterns sometimes. (My ADHD might look different every day because I don’t remember or because shiny things. I don’t know. You couldn’t expect me to get through this without a shiny reference right? You also only find patterns when you pay attention…). But I know that this is the reality I live in. ADHD is a part of it—legitimately. It’s a whole mix of things, not awesome or terrible, i just is.

So help all of us with ADHD out if you don’t have ADHD, please.
Say you’re really distracted.
Say you’ve got too much energy.
Say what you’re feeling, that’s cool.
Please, though, don’t compare your off day to ADHD.
It’s not the same thing. 

[catching up] self-care sunday: community.

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.