The realities of ADHD no one talks about

ADHD is often misunderstood, and there's a lot people don't talk about. In this video, we talk about the real experiences of living with ADHD—the struggles, the stigma, and the parts that don't fit neatly into the stereotypes.

15
min listen
Published on
October 29, 2024
Episode coming
October 29, 2024
Brainwaves
Episode  
8

Hey Friends,

We’ve all been there. It’s late, maybe around midnight. You’re staring at a mess of papers, half-finished notes, and random to-do lists, browser tabs in the background multiplying like bunnies. You’ve been here for hours - but somehow, nothing’s coming together. That familiar feeling of shame is creeping in as your brain screams at you to just focus.

If you’re anything like me, that screaming voice in your head sounds a little too much like parents, teachers, bosses, or others in your life saying things like…

"You just need a better system!"

"Try this planner!"

"It's all about discipline!”

But it’s not that simple. This isn’t laziness. This is not simply a lack of motivation. You do not just need to “try harder.”

It’s deeper than that. It’s about the very structure of your brain, which makes it function differently. You’re just built different. So it’s no wonder everyone else’s suggestions don’t work - you’re not driving the same kind of car! You have a Ferrari with bicycle brakes. You have ADHD.

🌟 The reality of late ADHD diagnosis

It’s hard to explain the kind of impact ADHD can have on your life - especially if you’re one of the many people who go undiagnosed until adulthood. Check this self-talk:

  • Why is everything so much harder for me than it is for everyone else?
  • I must not be trying hard enough…
  • I guess I’m just not capable of success…
  • Maybe I’m just not good enough.

With thoughts like those in our heads, who needs enemies? We beat ourselves up ten times as much as anyone else does, often in silence. That suffering is often hidden behind years of frustration, confusion, and, ultimately, shame.

And late diagnosis is a bigger deal than you might think. There are all kinds of long-term impacts on both mental and physical health, so pushing for earlier ADHD diagnosis is vitally important.

🌈Neurodiversity is really diverse

One of the biggest challenges for early identification, though, is that ADHD doesn’t look the same for everyone. People experience it differently depending on so many factors, including:

Don’t just take our word for it - check out this recent CDC update on adult ADHD.

Curious what this looks like? Let’s take ADHD in women, for example, which shows up in ways that historically don't line up with the diagnostic definitions and tools we use. It’s often missed or misunderstood, labeled as something else, or worse - brushed off as just stress or anxiety.

It’s also impacted by menopause - in fact, many women don’t get a diagnosis until menopause throws all their carefully self-made coping strategies out of whack. There’s a whole population of women out there who are living with ADHD but have been given a totally different story about what they’re experiencing and don't know why things are so hard.

That doesn't even begin to touch on the myriad ways that ADHD is experienced in other cultures, where different expectations and norms can shape how symptoms are perceived or even ignored. Again, even the ways we define ADHD have historically been based on white, Western cultural ideals.

👓 Seeing clearly with ADHD accommodations

If someone is nearsighted, we don't tell them they need to "just try harder to see." We get them glasses! So why do we expect people with ADHD to “just try harder" to focus or stay organized?Just like glasses help nearsighted folks see clearly, ADHD brains need their own tools and support systems.

But finding the right "prescription" (tools that actually work with our brains and help us where we need that extra support) can be tricky - especially if you've gone undiagnosed for years.

At work, that might mean:

  • Using peer support like body doubling
  • ADHD coaching
  • Uninterrupted work time
  • Written instructions
  • Wearing a watch
  • Using noise-canceling headphones

At home or in relationships, maybe it looks like:

  • Clear, visual reminders for household chores
  • Establishing routines that work for you and your family
  • Open and intentional communication about your needs
  • Setting shared goals that consider ADHD challenges
  • Finding a community that understands

💪 The A-Word (Ableism) and ADHD

Now glasses don’t change the fact that someone is nearsighted, in the same way these tools and accommodations won’t change the fact that ADHD is a real, legitimate disability.

And if calling it a “disability” makes you uncomfortable, that’s worth some self-reflection. There’s a lot of ableism baked into the idea that ADHD is somehow ‘different’ or not like those other conditions. When you internalize ableism, it becomes more destructive.

External Ableism Looks Like:

  • "ADHD isn't a real disability"
  • "Everyone's a little ADHD"
  • "You just need to try harder"
  • "But you don't look disabled"

Internalized Ableism Feels Like:

  • Believing you're just lazy
  • Thinking you don't deserve accommodations
  • Feeling like you should be able to "overcome" ADHD
  • Being harder on yourself than others

ADHD is disabling. Ableism is always bad, but it’s at its worst when it’s being used by someone who knows all your weaknesses: you. And that’s not even considering the layers of stigma that add to the weight of it all. The stigma around ADHD is real, and it shows up as:

  • Fear of discrimination
  • Reluctance to seek help
  • Shame about needing support
  • Hiding struggles from others

🔍 ADHD awareness matters every day

That’s why advocacy and awareness are so crucial... not just for a month in October but all year long. The more we talk about what ADHD is, the more we educate and show people the truth behind the diagnosis, the closer we get to a world where people don’t have to be afraid to ask for help. Where a diagnosis isn’t a label that limits them but a tool that lets them move forward and manage their ADHD.

ADHD is one aspect of your identity. Yes, it is a disability, but it doesn’t dictate your entire life. You have so many other facets—your creativity, your humor, your passions. ADHD may shape your challenges and strengths, but it doesn’t define your worth or your potential. You are so much more than this one part of your experience.

Isn't it strange how we can believe everyone deserves understanding and support... except ourselves? Let's change that narrative.

🦓 Finding your herd

The ADHD community has come so far, and we are beyond proud to be a part of it; to see people sharing their stories, advocating for one another, and refusing to let the world tell them who they should be. Because that’s a major goal here at Shimmer and what we’re doing with this podcast: creating a space where ADHD isn’t something to be hidden but something to be understood and embraced.

There’s a whole community out here - people who know exactly what it feels like to sit there with 100 tabs open, a collection of empty planners, and feeling like you’re lost in the weeds… and we’re rooting for you.

Okay, Until next time.

With love,
✨ O'Ryan, Noelle, and Trina

👾Noelle’s Top Community Resources

Looking for an extra dose of community? Here are some great places to start the search for your herd 🦓

  • Neuroqueer.org An online community for LGBTQ adults with ADHD and/or ASD to get support from peers and coaches.
  • CHADD Affiliates Connect with resources and find a local ADHD support group
  • ADDA Support Groups ADDA Virtual Peer Support offers ADDA members the opportunity to connect with peers for support in a safe non-judgmental environment.
  • The Mighty - ADHD Online ADHD support group for advice, tips, strategies, news, resources, and medical research.

📚 Even more resources

ADHD friendly meditation: If you struggle to meditate (like many of us with ADHD), try out a new technique our co-founder & CEO discovered on the Open app, called "Counting Breaths". She explains it in a video here. We loved it so much we got you 30 days of access to the app for FREE!  Get 30 days free →

5 reasons October ADHD awareness month matters: Learn more about ADHD awareness month and see how we celebrated. Read this blog →

ADHD Disclosure & Accommodation: What accommodations do you need? What are the pros and cons? How do you ask? Answer your questions here. Read this blog →

ADHD Disclosure & Accommodations: What accommodations do you need? What are the pros and cons? How do you ask? Answer your questions here. Read the blog →

ADHD Disclosure & Accommodations: What accommodations do you need? What are the pros and cons? How do you ask? Answer your questions here. Read the blog →

New to ADHD? Everyone's ADHD experience is unique, but that doesn't mean you have to go it alone. in the guide you will find a glossary of common ADHD terms, symptoms, challenges, and concepts to help you better understand the way your unique brain works and how you can better leverage it. Read the guide for free →

Episode Transcript

O'Ryan McEntire: It's late, maybe around midnight, and you're staring at a mess of papers. Half finished notes, random to do lists, browser tabs are multiplying like bunny rabbits. You've been here for hours, but somehow nothing's coming together. Every time you think you're getting somewhere, that thread slips away. Your brain is screaming at you, and the shame sets in.

Fara Jamil: I just couldn't figure out why I was struggling with being late.

why am I always late to work? I know exactly when I need to be to work. Even if it's by a minute or five minutes, it doesn't matter. I'm late, right?

Jemarc Axinto: I would still have elongated periods of just being shut down, or I would have extensive periods of just being like having the zoomies and being like, I don't understand what's going on. And my partner whom I'm, who we've been together for nine years, he's a future psychiatrist. And they're like, babe, I think you have ADHD.

Amanda Norman: I didn't know I had ADHD. I always thought these little behaviors and habits I had were just personality traits or things that were wrong with me. It's definitely like, what's wrong with me? Why can't I just be on time? Stay tidy without thinking about it? Why can't I start things early and not procrastinate?

Trina Haynes: I didn't know I had ADHD. I struggled in school really, really badly, but I never knew why. I never knew what the problem was, so I just blamed myself.

O'Ryan McEntire: This isn't laziness, a lack of motivation, or that you just need to try harder. If you're listening to this, you know exactly what it feels like. People around you might say it's a willpower or discipline problem, that you just need a system or a planner or some trendy to do list full of bullets or whatever.

But those of us with ADHD, we're reminded every single day of all of the ways the world is not set up for the way that our brains work. It's hard to explain the kind of impact that ADHD can have on your life, especially if you're one of the many people who go undiagnosed.

When you don't know why certain things are harder for you than they seem to be for everyone else, it's easy to feel like you're just not trying hard enough or that maybe you're just not as capable somehow. And that suffering is often silent, hidden behind years of frustration, confusion, and ultimately shame.

Jesse Anderson: growing up in school, I was like, something's weird, something's different about me, I don't know what it is,

LeighAnna Morris: I remember taking a note around to all my teachers, and one of them was like, there's no way you have ADHD. You're such a good kid, and you're so quiet. That was one of those things that made me feel like it wasn't real I hated that that was part of my history because that then caused me to question a lot of things going forward with my ADHD.

Elisabeth Bridges: I went to a doctor because I was just getting headaches all the time and it was always when I was working or doing schoolwork or something, it seemed like I just had to give so much extra effort that like I had to work twice as hard as everybody else just to do the same thing.

O'Ryan McEntire: And ADHD doesn't look the same for everyone. People experience it differently depending on so many factors. Background, culture, age, gender, orientation. ADHD shows up in women, for example, in ways that historically don't line up with the diagnostic definitions and tools we use. It's often missed, misunderstood, labeled as something else, or worse, brushed off as stress or anxiety.

There's a whole population of women out there who are living with ADHD, but have been given a totally different story about what they're experiencing, and don't know why things are so hard.

And again, that doesn't even touch on the myriad ways that ADHD is experienced in other cultures, where different expectations and norms can shape how symptoms are perceived, or even ignored. Because even the ways that define ADHD are based on white, western, cultural ideals.

Alejandro Sandoval: When you go to a medical professional, let's say a doctor, a therapist, whatever, right? Something you're going to a diagnosis, there's this lovely book called the DSM, and they base diagnosis off this book. That's supposed to, take their cultural context, right? we all know that that doesn't always get Done. It doesn't happen all the time, unfortunately, and especially when there's a provider that just visually looks different than you, grows up in a different context, doesn't have the same understanding of language, of expression, there's a power differential there. 'cause someone is giving you treatment and when you start adding all of these elements up, you are very vulnerable to be misdiagnosed or to not be diagnosed period.

Elisabeth Bridges: I think that my ADHD was overlooked all of my childhood because MyADHD didn't show up as the typical bouncing off the walls talking a lot, interrupting in class, was just a lot going on in my head, lots of thoughts, and so I seemed more like daydreamy or lost in thought

Chris Wang: Most of my life, it was just me being the rebel kid. but For Asians, we don't think about mental health, we in your family, you don't talk about it, there are no words for it, so until I actually left my home and moved away I started learning all of the subsets of mental health, behavioral health, neuro developmental challenges, all of these things were like just things that you just are taught to not talk about

Fara Jamil: when I first discovered that I had ADHD, I honestly did not recall anyone in my diaspora talking about ADHD, except as a joke. As in it was just something maybe more of a pop culture reference versus an actual clinical diagnosis. when I started talking about it, and letting people know whom I trusted, that I have ADHD, lot of it was like no, that can't be right. No, no, you can't have ADHD. You just, don't look like someone who would have ADHD. And I didn't know what that meant.

Alejandro Sandoval: not between anyone were we talking ever about, ADHD, much less mental health, right? Those were usually described as Oh, you're lazy. Oh, you need to just concentrate better. What's going on. No understanding, definitely, definitely no compassion I also myself didn't know anything about it growing up.

Dr Jenny Mai Phan: my parents were refugees from Vietnam who immigrated to Southern California and we grew up poor. So my parents focused on survival and assimilation. there wasn't much room to address any sort of neurodivergence. it wasn't until college that I started to learn about these topics.

then later, through raising my autistic and ADHD children, that I began to see similar characteristics in myself, and led to seeking a diagnosis, which further validated all the experiences and questions that I had growing up.

Izzie Chea: the discussions surrounding ADHD and mental health, were, again, non existent, in my family. My mother's family were immigrants from the Dominican Republic. There was a lot more pressure on them to fit in and assimilate and be part of that dominant culture that was like at the forefront of their minds with survival so, if there was any sort of deviation from, Their expectations, you'd find yourself pretty isolated, pretty lonely, trying to figure out how to like, be a human,

O'Ryan McEntire: If someone is nearsighted, we don't just tell them to try harder to see. We give them glasses. We give them the tools that they need. We accommodate and provide support. ADHD also needs its own glasses, so to speak. Tools that actually work with our brains and help us where we need that extra support. For some, that might mean using peer support like body doubling, coaching, or even just asking for uninterrupted work time and written instructions.

Maybe it means always wearing a watch or noise canceling headphones. At home, it could mean setting up clear visual reminders for household chores or establishing routines that work for you and your family. In relationships, that might mean open and intentional communication about your needs, setting shared goals that consider ADHD challenges. For others, it might mean finding a community that understands so you don't feel like you have to constantly mask and translate your language into theirs.

Jemarc Axinto: our neurodivergence wasn't discussed or wasn't acknowledged. That neurodivergence was considered or any kind of mental health issue was considered a weakness. And the way we collectively survive that is masking and then what comes from that. Is a lot of unresolved and unhealed issues around sense of self worth, which is something that I still deal with.

Chris Wang: I think that What that does to a kid is you start to think that why are you always getting into trouble and other people aren't? Your parents say things like, why can't you just be quiet? Or why can't you just be sensible? Like insert other girl's name here.

O'Ryan McEntire: Now, glasses don't change the fact that someone is nearsighted in the same way that these tools and accommodations won't change the fact that ADHD is a real, legitimate disability. And if calling it a disability makes you uncomfortable, that's worth some self reflection. There's a lot of ableism baked into the idea that ADHD is somehow different or not like those other conditions.

When you internalize ableism, it becomes more destructive. ADHD is disabling. And when the ableist beliefs you've heard all of your life become a part of your narrative, you turn that judgment and condemnation in on yourself. Ableism is always bad. But it's at its worst when it's being used by someone who knows all of your weaknesses.

You.

And that's not even considering the layers of stigma that add to the weight of it all. Fear of being treated differently, judged, or not taken seriously, keeps people from even seeking help. The fear of being dismissed or worse, reduced to their diagnosis, is real.

And that stigma around ADHD isn't just in people's heads, it's out there, and it's one of the barriers that we have to keep breaking down.

Chris Wang: Thought I was the only one in the world, but I had a special desk that either faced the teacher so I would be like right in front of them or I would have a desk that was like in the corner of the room facing the side or something a lot of it was always like oh how do we like make sure that like Chris doesn't distract everyone else

Active Speaker: I thought ADHD meant you can't focus at all. You're always jumping around. And I would spend hours focused on organizing, my magic cards, or video games, or something that, you know, stimulated my brain.

Fara Jamil: And he was describing so many of my symptoms, you know, the procrastination, the time blindness difficulty starting tasks, like all these things. And then I'm saying that sounds like me . So the next day I luckily had an appointment with my psychologist and I said to him, I think I have ADHD. And he laughed. He said, no, you don't. I said, what do you mean? And he said, you're highly educated, you have loving family and friends, you have a full time job. And then he also added, and you're very charming. And so I looked at him and I said, what do any of those things have to do with whether I have ADHD or not

Elisabeth Bridges: Especially if you're diagnosed late with ADHD, you have like years of shame built up that you have to forgive yourself for because you didn't know what's happening.

O'Ryan McEntire: That's why advocacy and awareness are so crucial, not just for the month of October, but all year long.

The more we talk about what ADHD is, the more we can educate and show people the truth behind the diagnosis. The closer we can get to a world where people don't have to be afraid to ask for help. Where a diagnosis isn't a label that limits them, but a tool that lets them move forward and manage their ADHD.

Izzie Chea: It's very telling, how much our culture, with the dismissal of symptoms and actual issues that we're dealing with, can really break down, the neurodivergent child.

Jemarc Axinto: what I found was the diagnosis was actually incredibly empowering for me because I had been navigating the world post rewiring my nervous system rewiring the complex PTSD and all those other conditions.

Still feeling like there was something wrong with me. And so learning that I had ADHD and diving more deeply into study of what that means, how does that show up? And sometimes I still struggle, like I said before, but it really allowed me to reduce a lot of shame and how I show up in the world.

Chris Wang: Getting my diagnosis was extremely freeing and empowering. Instead of all of the traits that I thought were just me, they now had four letters. And those four letters helped me take blame off of myself, but also allowed me to have resources and a path forward and to be able to seek support and also get this awesome community that comes with having ADHD.

It gave me permission to have forgiveness for parts of me that wasn't exactly me. It was my ADHD, but kind of me.

Eugene Yao: So I ended up researching online, like, Hey, why can't I focus? And that's actually the first time I read up on ADHD. So this happened only. Eight months ago. So it was really recent read up, on it. And I realized, wow, these are all my symptoms. A diagnosis in New Zealand takes about half a year. So then I traveled to us. where it was almost immediate because there's a lot of psychiatrists. So I got diagnosed with combined type ADHD. I'm always stimming. I'm squeezing this here. I have a fidget ring here. I'm just always moving around. after I got diagnosed, my whole life basically made sense. I knew that I was like, Hey, when I was in high school and also in college, I was looking at everyone else. They can sit still like what? So I like, observed everyone all the time. I'm like, why are they not changing positions? I didn't know what was wrong with me. But then after I got that diagnosis, I was like, Oh, that made so much sense

ADHD is one aspect of your identity. Yes, it's a disability, but it doesn't dictate your entire life. You have so many other facets, your creativity, your humor, your passions. ADHD may shape your challenges and strengths, but it doesn't define your worth or potential. You are so much more than this one part of your experience, but when it goes unmanaged, it will have an overwhelming impact on your life. Isn't it weird that you likely believe that everyone deserves compassion, but deep down you also think that maybe you're the exception to that rule?

Chris Wang: it's often not about pushing harder. It might be about you changing your external environment so that you have more opportunities to actually do something.

Jemarc Axinto: Culturally, we were taught to thrive and succeed, because through the lens of immigrant parents, that was how they survived, and therefore that's how we had to survive. And so my biggest challenge was reaching a space of can we redefine what success looks like? Can we redefine what it looks like to be happy? Can we redefine what it feels like to be enough?

Chris Wang: It takes intentional effort to do that and to give yourself the permission and space to actually work on these things.

O'Ryan McEntire: The ADHD community has come so far, and we are beyond proud to be a part of it. To see people sharing their stories, advocating for one another, and refusing to let the world tell them who they should be. Because that's a major goal here at Shimmer, and what we're pushing for with this podcast.

Creating a space where ADHD isn't something to be hidden, but something to be understood and embraced.

There's a whole community out here, people who know exactly what it feels like to sit there with a hundred tabs open, A collection of empty planners and feeling like you're lost in the weeds, and we're rooting for you.

Until next time.

Speaker 2: Hey there, Coach Noelle here. We'd love to hear from you. Go to shimmer.care and leave us a message, or if you're subscribed, you can reply directly to the email.

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