Listener Stories: Where were you when you found out you had ADHD?
Like any good superhero, we all have our origin stories. Unlike those same superheroes, we sometimes struggle to save the day if we’re distracted by shiny door knobs.
This week, we’re sharing the stories our listeners submitted about their diagnoses. Where were you? How old where you? What do you remember about the time and how you were treated? Whether you were six years old and super confused, or 36 years old and … well… super confused, your story matters. And we think that these stories have something to teach, too. Just hearing how others were first diagnosed offers each of us a chance to reflect on our own path. If nothing else, certainly, they’re a reminder that we are not alone.
Stories of shiny door knobs this week on The ADHD Podcast.
Episode Transcript
Brought to you by The ADHD Podcast Community on Patreon
Pete Wright: Hello everybody and welcome to Taking Control: The ADHD Podcast on TruStory FM. I'm Pete Wright and right over there, it's Nikki Kinzer. Look, it's Nikki.
Nikki Kinzer: Hello. Hi. It's me.
Pete Wright: I like pretending that this audio mechanism here is somehow that we're surprising one another, we're jumping out of a box or something. It's a real Sesame Street vibe that we're going for. How you doing? You feeling good.
Nikki Kinzer: I'm doing good. How about you?
Pete Wright: I'm good. Happy ADHD Awareness Month continues.
Nikki Kinzer: Yes. It is continuing.
Pete Wright: Have you done anything this week to make you more aware of ADHD?
Nikki Kinzer: Well, I did do a TADD Talk.
Pete Wright: Oh that's something. You have to be aware of your ADHD when you do that.
Nikki Kinzer: Yeah. Actually I forgot to mention this last week, but TADD is a spinoff of Ted Talks and they've been doing this, ADDA, is the organization that's been doing it and they've been doing it for years now. And it's pretty cool because it's these little nine minute little talks that experts give and you get one each day of October. And I did one of those and that was fun because I actually did talk about some of my clients and some of their success stories and some things that they were doing to help them. And the whole kind of theme of the TADD Talks is actually having experts and people with ADHD talking about really positive things. What has been a success or something to celebrate. I contributed my awareness to that platform and highly recommend people to go check it out because I think it's pretty cool. I'm trying to think if there's any, I always feel I'm aware and I always feel like I share.
Pete Wright: Yeah, aware and share.
Nikki Kinzer: Yeah, because when people find out that I work with ADHDers then they're always very curious about what that is and what that means. And they always know somebody or they have it themselves. I try to spread the awareness around.
Pete Wright: Just so everybody knows, we have a meeting before we podcast and I'm going to out you just a little bit.
Nikki Kinzer: Oh jeez.
Pete Wright: Because I think you'll be okay with it. We were talking about some things that we're doing for our member program and Nikki stops in the middle and says, "Oh my God, I'm channeling my ADHD right now." And it's so rare to hear you say it like that. Now you out yourself with anxiety all the time. You're wear that on a flag, but to be sitting there and we're sitting there with Melissa and I was just laughing and smiling from ear to ear because it's just, it's so relatable when you stop and become aware so immediately of even your own tendency. Beauty of the spectrum disorder right there.
Nikki Kinzer: Well right. And just to kind of give people context, I was avoiding. I was avoiding two major workshops. I'll just be transparent. We have these workshops that we do for our Supreme members of Discord and our Patreon membership and we're behind. And we needed to do August and September and oh boy, I've just been avoiding them. And I see it on the list and I'm like, yep, I've got to do that. And then I feel bad about it because I haven't done it yet. And then I see it again the next day and I'm thinking, I've got to do that.
Pete Wright: It just keeps coming.
Nikki Kinzer: Yeah. And I knew. I knew. It's like, okay, I'm avoiding this for some reason. And anyway, thankfully Pete got one of the workshops out of my mind.
Pete Wright: But I was behind. You know what? I was totally behind on mine. It was this ADHD Apple Watch walkthrough, features of Apple Watch, answering some questions that came in. And I realized as I was recording it, why I didn't want to do it because I knew I would have to have this camera mounted over my wrist. And when you're looking at a camera so close, I was like, oh, my skin is all splotchy. I thought, maybe that's why I have splotchy skin shame so I didn't want people looking so closely.
Nikki Kinzer: Aw, you didn't want people to see it.
Pete Wright: At my hairy, splotchy yeti wrists. I told you about my Korean story when I was in South Korea and I was in a movie theater and somebody started petting my arm next, a stranger and laughed and said, [foreign language 00:04:52], furry, furry like a bear.
Nikki Kinzer: Oh, that is a terrible thing to say.
Pete Wright: Yeah, that's what happened. And so I think I have some latent hairy arm, hairy, splotchy skin arm shame and I didn't want to do it. But I did it so don't make fun of my hairy, splotchy skin. Anyway, we did great. We're moving things.
Nikki Kinzer: Yeah, we worked it out.
Pete Wright: We're moving them through. It's coming. They're coming so be ready. Anyway, let's go ahead and start the show because we've got some great stories and we're belaboring the point. Needless to say, we are aware of ADHD hardcore.
Nikki Kinzer: Yeah, we are.
Pete Wright: We're so aware. We are so aware. All right, before we dig into the wonderful submissions for the topic this week, head over to takecontroladhd.com. Get to know us a little bit better. You can listen to the show right there on the website or subscribe to the mailing list and we'll send you an email each time a new episode is released each week. Connect with us on Twitter or Facebook @takecontroladhd. And if you've ever thought, hey, you know what? That Pete and Nikki, they're doing a lot of great work in the world and they've got a little team that they're supporting who are creating resources and putting things together and packaging things and trying to teach us more about our ADHD. I wonder if I could support them directly somehow? Somehow how could I do that? I have an answer for you. It's at patreon.com/theadhdpodcast.
Pete Wright: Every single subscriber over there, every Patreon, that contribution goes directly into the time that we are putting into building resources for ADHD and incredibly helpful for allowing us to launch new initiatives. And we're trying. We're trying so hard to get over the hump on some new things. One of which is a podcast about ADHD Pete stuff, which might be the title. I don't know, could be new title every week. It's if the podcast is called New Title Every Week with Pete. It's going to be really great.
Pete Wright: But also join Nikki for Study Halls. Also, get access to these monthly workshops just for Supreme members. And let me tell you, if you've never thought about becoming a Supreme member, this is the month because you get not one, not two but three ADHD bonus workshops this month. They're going to be coming at you, you're just going to be, just a plague. You will be plagued with workshops.
Nikki Kinzer: With workshops.
Pete Wright: Yeah. We've just got a lot going on and we frankly, we could use your help though. If you've never thought about subscribing, head over to patreon.com/theadhdpodcast and check it out. We deeply appreciate all of you. And to those who are already subscribers and supporters, thank you so, so, so much.
Pete Wright: All right, Nikki Kinzer, here we are. This, we posted this question and got some answers. Where did this come from? This particular question, why did you want to post this particular question?
Nikki Kinzer: Well, because Melissa, Discord Mom, said she thought it would be a good idea and you and I both agreed that yes, it sounds like it would be a good idea. And I do. I think it's a really interesting kind of take, where were you when you found out you had ADHD? It's kind of like, where were you when 9/11 happened? Where were you when these historical things happened? And obviously finding out you have a diagnosis is a historical thing for you in your life. It is interesting. And we always like to hear from our listeners and share their stories with other people that are listening because I find that people relate to them and they can learn something from them. And I just think it's a cool take on ADHD awareness.
Pete Wright: I absolutely love all of these answers that we've gotten because some of them feel a little bit related to my own experience but most of them are not. It shows the breadth of experience that comes to how we each discovered that we have ADHD or in many cases, we're told that we have ADHD and I really adore the broad spectrum of responses. I think they're really, really great. We thought, let's talk about where were you when you found out you had ADHD? And see what you decided to share. Who do want to go first? How are we organizing these things?
Nikki Kinzer: Well, I say we go through the way that they were diagnosed. We've got childhood diagnosis. We have a few people that are talking about that. Adult diagnosis, we have a few people talking about that. Let's start with those children.
Pete Wright: Okay. Starting with the children and the thing about children, I was thinking back to the kids that I knew when I was a kid who had ADHD and who were diagnosed with ADHD, the way they were treated, the way they were pulled out of class in some cases, the way they had accommodation tools. There was a, a young man in my middle school who had, he carried around a typewriter because his handwriting, he was dealing with impulsivity to the point where he couldn't write, nobody could read his handwriting. His hand was moving too much. And so he would type everything.
Pete Wright: And I just, I've been really reflecting on that, on how he was treated, on how he was looked at and just really sad. And in some respects, I am grateful that I didn't deal with the social stigma because I went to a small school and without him, I might've been noticed more. There's that real lizard brain response that I feel like he was out in front of many of us who also lived with ADHD at that time but didn't get noticed because he was such an outlier. My hat's off to him today, wherever he ended up.
Pete Wright: All right. The first one I've got here under childhood diagnosis. I was diagnosed with ADHD and ODD when I was about six. My mom's professor needed kids between an age range for a psychology study like the ones you see on college campuses that offer five bucks to answer some questions. I was in the age range so naturally I was volunteered. It was doing some basic stuff like solving mazes and pattern recognition and stuff. In between the stuff I had to do, I couldn't sit still or even stay in my chair a good chunk of the time. I had to move or I would get physically uncomfortable. I didn't know how to manage those feelings. The only way I knew how to manage those emotions was by growling, biting, hitting and breaking or throwing things. The professor said he could take us afterwards to the health center. Since my mom was a student, I could get treated there as well. After the professor spoke with the psychiatrist, they had me do various activities while another person spoke to my mom. Before we made it out the door, we had the diagnosis.
Pete Wright: That means a lot, the whole idea. And I think that covers a number of folks, the way you sort of accidentally land on a diagnosis by way of something else.
Nikki Kinzer: Well and I also think it's really interesting, the awareness of the only way I knew how to manage those emotions was by growling, biting, hitting and breaking and throwing things because that makes sense too. As a child, especially at around six or seven, when this was happening, you don't know how to put words to how you're feeling. And so that's the only way that you can really have any kind of release of this frustration. It makes sense that that was happening. I appreciate the awareness around that so that I think with parents, especially if you've got kids that are struggling and they're acting out on these kinds of ways, that there's probably a reason. They're having a hard time putting words to what they're feeling.
Pete Wright: And how grateful to have this discovered in a community of professors and specialists who can help you and diagnose you right away.
Nikki Kinzer: Yes, absolutely.
Pete Wright: That's a gift we should probably raise a glass to. What's the next one?
Nikki Kinzer: I was diagnosed at 13. When I found out, I felt like everything came crashing down around me. I was already hormonal and felt weird in my body and now my head is all wrong. I felt like I had no one who could understand my feelings and unfortunately I almost committed suicide. I felt as if nothing would or could improve the situation but then it did. I got on medication and for the first time in my life, things began to make sense. The chaos I was used to calmed down and I realized with medication and therapy, I could get used to this new normal. I'm grateful I didn't go through with it and I wouldn't change a thing about me now. Powerful.
Pete Wright: Yeah, powerful and what a hard journey to move through. That it wasn't discovered even a little, just a little bit earlier so you don't have to go through quite this.
Nikki Kinzer: Yeah, it's a tough age.
Pete Wright: The dark night of the soul at 13.
Nikki Kinzer: Oh absolutely. And that's a tough age, especially when you are more aware of what people think and how you're noticing that things aren't the same for you. And I'm sure Pete too, we are very grateful that you are here to talk about your story. I appreciate it.
Pete Wright: And as sad as it is, it is I think a fairly common story. As dark as it gets, especially driven by hormones of early teendom.
Nikki Kinzer: Well and I just want to say, if anybody is struggling with those type of thoughts and feelings, make sure you reach out and get help. And I know I don't have it with me, but Pete you probably can put in the show notes a suicide hotline too, so that people know that there's a place to go.
Pete Wright: Yeah, actually there's a help and support channel under the ADHD official in Discord. And Melissa had put that in there and it's really, really handy. And so we'll post links over to that channel.
Pete Wright: Next, we've got a young one. I was six years old when I was diagnosed. My mother always tells me that her mother would notice that something was always off about me. I was a very hyperactive child. I remember getting in trouble quite often in school the year I was diagnosed. I recall I did not really start therapy or medication until I was about eight years old. For me, the two biggest things that have been a theme in my journey is that I did really well in grade school and even graduated 10th in my class but when I went off to university for my bachelor's, I did not have the same level of support or structure. The other thing is that even though I was diagnosed and treated for my ADHD at such a young age, my parents weren't able to meet my emotional needs and I was shamed a lot, which turned into chronic self doubt. I think that is in large part to the fact that my parents never had ADHD effectively demystified for them, creating a lot of that residual shame.
Pete Wright: Okay, this one hit me square in the chest because I think this is a pretty common thing in parenting circles. And I feel like this is a question we need to pin. And when our friends Parent Palooza come back, we have to ask them about this because there is at least in my circle, when some parents find out that their kids have ADHD and they go through the diagnosis and they build all the support mechanisms and things, there is a place at which we we normalize that state through humor, gallows humor even, that can come off as insensitive because we don't know any other way to do it if we're not living with ADHD ourselves.
Pete Wright: That sometimes we feel like we've done enough as parents by getting the diagnosis and putting all the tools out here and now we don't know kind of what else to do and it can create an unintentional circle of shame in families when you don't have that. Especially when there are multiple kids living with ADHD or multiple people in the family living with ADHD and one parent doesn't have it, that kind of a thing. I just feel like that finding that balance, that communication balance, where parents are as equally motivated to be demystified about ADHD and not just check all the boxes, I think that's important. Do you run into that? Am I just, I don't know.
Nikki Kinzer: Oh no. I think this is absolutely more common than we wish it would be. And it is, I think that when we talk about ADHD, a lot of times the emotional piece of it isn't always highlighted. It's more about, oh, these are the challenges and here are some strategies and people still think that ADHD is all about just attention and it's not, it's much deeper than that. If you don't have a real understanding of how it affects all pieces of your life, I can see how it can easily get into this shame spiral that you're feeling. And the other thing that I think was really interesting about this is how, when the listener went off to the university and did not have the same level of support, it sounds like that that was also a huge, huge struggle. And I think that I find that all the time with the students that I work with is they usually don't see me until after the first or maybe two semesters, like after that first year, I get a lot of sophomores because that first year was such a struggle. It's real.
Pete Wright: All right. You got the next one.
Nikki Kinzer: I sure do. We are with the adult diagnosis now. That's what we're going to talk about.
Pete Wright: Fancy.
Nikki Kinzer: In my late twenties, a friend asked me if I had ever been evaluated for ADHD. That's an interesting question to ask. So friend, do you think you might have this? I kind of scoffed at the idea at first. I didn't think I fit the stereotype but the idea stuck with me and I got a hold of Driven to Distraction and the slow process of trying to find someone who would conduct an evaluation started. Three to four years after that first question, I finally found a psychiatrist willing to let me try meds and my life changed. My initial reaction was just relief. I wasn't stupid or lazy. And when I told colleagues and friends, many would just smile and go, "Oh yeah, that makes sense." I went through a period of two to three years of super quick personal growth. I felt more confident. I achieved a lot at work. I made a lot of new friends. It was like I had a lot of catching up to do and I could finally enjoy things that had frustrated me in the past. Oh, I love that. What a nice, nice story.
Pete Wright: Yeah. I'm curious how the rest of these play out with the sort of hey, you ever think you might have ADHD? In hindsight, as somebody who had that delivered to him himself, that's me. I think about that question. How do you tell somebody that they smell good? It's always weird. It's just a weird thing. How do you tell somebody that they might have ADHD and might not know it and not make it awkward? It's very much a hello fellow kids, how you do fellow kids? Kind of an awkwardness.
Nikki Kinzer: Yeah, I got to say it's really interesting because I had a client a few years ago that once we started talking and he had the diagnosis of ADHD so that wasn't the issue but I could tell there was a lot of anxiety that was coming up too. And because I can recognize it so quickly because I have it myself it was I could see it. But it was interesting because as we were talking about it, I became really aware that he wasn't aware that that's what was happening. And so it is interesting that question, because are you going to be surprised? Or have you already thought that maybe you have it and you just are now being kind of called on it for some reason? It's just an interesting dynamic. It would be interesting to kind of see, I would love to interview that person that asked her that. Why? Why did you ask that? What made you think? Or him or her after.
Pete Wright: Because there is a projection going on there at some level?
Nikki Kinzer: Right. Yeah, totally.
Pete Wright: It's like I feel much more comfortable asking somebody if they think they've ever experienced any symptoms of ADHD because of my experience with ADHD but part of that is because I've been hosting an ADHD podcast for 10 years. That I feel like I can get away with stuff maybe a little bit more than friend.
Pete Wright: I didn't find this out till I was in my thirties but I was diagnosed as a child in school with AD. What? Wait a minute. I didn't find out that I had been diagnosed when I was a kid until I was in my thirties.
Nikki Kinzer: I didn't find this out.
Pete Wright: That is something to stop and think about because oh, I just, I'm going to read the whole thing and then I'm going to react in shock and awe. I didn't find this out till I was in my thirties, but I was diagnosed as a child in school with ADD but my parents didn't believe it was a real thing. They just thought it was lazy parents who didn't want to deal with a hyperactive child.
Pete Wright: As a kid, I was oblivious that I even had a problem. And a problem is in heavier. It wasn't until my late twenties that I sought out help on my own, tired of losing jobs, going broke, train wreck relationships. But even then I wasn't diagnosed with ADHD. I was diagnosed as having bipolar disorder and put on medication for it. Another four or five years of not getting much better and changing my psychiatrist about five times, I finally had one tell me I had ADHD and put me on medication. I'd be lying if I said that solved all my problems, not even close but it was a pinnacle point that started me on a path of self awareness, seeking out ways to help myself become more organized, led me to the Taking Control Podcast, along with numerous books and even some therapy thrown in there. I didn't go bankrupt, lose a job or spend an entire morning looking at a shiny doorknob for no apparent reason.
Pete Wright: Shiny doorknob is now a mantra for me too. I'm going to be using that a lot, shiny doorknob. This is, I have to imagine that there are a lot of these, especially kids in the eighties.
Nikki Kinzer: Oh, for sure.
Pete Wright: This is a kids in the eighties syndrome.
Nikki Kinzer: Absolutely because even when you were talking about earlier, when you were saying you were talking about your class and I'm thinking, because I grew up in a small, well, my elementary school was really small and middle and high school was average size. But I still can't remember really anybody. I can't tell you if anybody had ADHD or not. I don't even know if it was even talked about. And I'm definitely a kid of the eighties. I don't know. I think that, you're probably right on with this just the time era.
Pete Wright: Well, and I think that because my middle school had I think there were maybe 35, 40 kids between seventh and eighth grade. It was a small place. When one person, and that person I was talking about, we'll call him Eric. When Eric would, he was loud and proud about his ADHD. There was nothing else he could be. And so in a community that small, when you go to parents night as a parent and you see the struggles that Eric's parents are going through in communicating with the teachers who at that point were not trained terribly thoroughly on how to deal with ADHD in the classroom, it becomes a norm that you don't want to land on as a parent. I can absolutely see as a parent making this choice thinking, okay, this will not reflect poorly on me. Nobody understands what this is. It just didn't happen. We're just going to pretend it didn't happen.
Pete Wright: And I got that. Of course, of course, that happened to a lot of us. And it goes straight to the point that when I found out I had my ADHD diagnosis, I almost couldn't talk to my parents about it. They were so stubborn about the fact that I now had this acronym that described 15 years of school frustration because they felt a great deal of shame that they didn't see it thoroughly themselves. I absolutely understand that.
Nikki Kinzer: Oh yes. Yes. Well and kudos for this person to be able to reach out and get help on their own too later, they were older. I think it takes a lot of courage and just being brave to say, "Hey, I need some help. Something's not right."
Pete Wright: Absolutely.
Nikki Kinzer: Yeah. Okay, here I go. I had a gastric sleeve when I was 27 after reaching a 145 kilograms, I lost about 45 kilograms fairly quickly. I have to ask, because are kilograms weight like the pounds? How is that different?
Pete Wright: One kilogram is 2.2 pounds. That's the ratio, roughly 2.2 pounds. When you're looking at a 145 kilograms, that's 319 pounds.
Nikki Kinzer: Okay. And then they lost how much then?
Pete Wright: 45 kilograms, which is 99 pounds.
Nikki Kinzer: Wow. Okay, fairly quickly.
Pete Wright: That's a celebration too.
Nikki Kinzer: Yeah, absolutely. And which was awesome. Over the next couple of years, I put a lot of the weight back on so revisited my surgeon. Being an ethical doctor, he referred me to a psychologist before committing to further surgery because he believed a lot of my eating problems were mental. Within half an hour, the psychologist suggested I may have some ADHD traits but we parked it because I was there for an eating disorder primarily. In the sixth session, I found I was stuck on a simple written task, something like name your anxieties in the workplace. I kept getting stuck on one idea and couldn't move past it. At that point, she whipped out the questionnaire and I did it there in her office. She emailed me the results and some suggested psychiatrists who specialized in adult ADHD. That was four years ago when my first son was two and a half and my second son was three months from joining the gang. I'm not sure I would have survived as a parent of multiple kids if I didn't have the appropriate treatment and insight into how I operate.
Nikki Kinzer: Wow. First of all, kudos to having ethical doctor and for the psychologist and this person to keep working together to figure out kind of what was going on. Because that's the problem I think that I hear a lot with clients is they don't have a lot of time with the doctor so they prescribe the medicine and they say, "Okay here, try this and see if it makes you feel any better." And if you have ADHD, the medicine can definitely help but if you have other things under that as well, depression, anxiety, which the three usually do go together, it's really difficult to really figure out is it the ADHD that's causing the stress or the depression? Or is it the depression that's causing the anxiety or the ADHD?
Nikki Kinzer: And so just kudos to them to really figure out that there was something underlying here and that was the ADHD. Because especially with eating disorders, I would love to get somebody on here to talk about eating disorders and ADHD and the connection there because there is and I've heard some people speak about it and that's one of my goals for our show is to get somebody to talk about that. Thank you so much for sharing your story here.
Pete Wright: Last we have here, the last one, my son was diagnosed in third grade, after being kicked out of school until receiving a diagnosis. Then when my daughter started having trouble in school, focusing in high school, I thought to have her looked at. She was also diagnosed then. Around age 37, 38, I was diagnosed while going through a divorce. Now that I'm learning so much about ADHD, I notice that my mother is so hyperactive and my father has some of the very same tendencies as me and my two brothers I'm sure also have ADHD so very inheritable. I find it all very fascinating. And so do we.
Nikki Kinzer: Yes, we do.
Pete Wright: And I have not yet said anything to my extended family because they I believe would, we don't communicate well enough, but I really believe I've got some cousins on the family tree that need to have that diagnosis locked down.
Nikki Kinzer: You would be the person at the family reunion saying, "Hey, have you ever thought about ADHD?"
Pete Wright: Yeah, that's it. that's going to be me. A 100%. A 100%. I'm going to lock down the entire party. So inheritable. And I think that's just really powerful. But the real question is, is at what point do you talk to your mother and father and say, "Hey, adult ADHD doesn't discriminate by age."
Nikki Kinzer: It's true.
Pete Wright: You can get diagnosed, they call these gray diagnoses, when you get diagnosed for these spectrum disorders in later age and it's never too late to figure out how your brain works, learn more about it. Get over the stigma.
Nikki Kinzer: Absolutely right.
Pete Wright: Very powerful. These are some great stories, Nikki Kinzer.
Nikki Kinzer: I know. Thank you guys so much for sharing. Appreciate it.
Pete Wright: That means so much. And I hope, my real hope is that as you listen to these things, as you listen to us read these stories, that you find some nuggets in here to relate to that sound like your story. That give you some hope that with the right resources and the right community, you can find your own way through your ADHD just like the rest of us are. One day at a time, one foot in front of the other.
Nikki Kinzer: That's right.
Pete Wright: Pajama pants and all.
Nikki Kinzer: And no shoes.
Pete Wright: And no shoes. Thanks everybody. Thank you for downloading and listening to this show. Thank you all for your time and attention. Don't forget if you have something to contribute to this conversation, we're heading over to the show talk channel in our Discord server and you can join us right there by becoming a supporting member at the Deluxe level or above. On behalf of Nikki Kinzer, I'm Pete Wright and we'll see you right back here next week on Taking Control: The ADHD Podcast.
