E52 - You Are Not Alone - ADHDifference

Wherever on your ADHD journey, you are not alone. Julie and Jel Legg reflect on the importance of community, connection, and shared experiences for those living with ADHD.

The conversation is sparked by their attendance at a recent author’s event, where they recognized the overwhelming sense of affirmation and belonging that came from engaging with readers who identified with The Missing Piece, Julie’s book for women diagnosed with ADHD later in life.

KEY TAKEAWAYS

Community is critical: Finding like-minded people helps mitigate feelings of isolation that can accompany an ADHD diagnosis.
Affirmation matters: Small affirmations from others who understand ADHD can be deeply validating.
You are not alone: Many have similar struggles, and shared stories create a sense of belonging.
Diagnosis is a journey, not a destination: Post-diagnosis, understanding and self-acceptance continue to evolve.
ADHD is constant but not central: It influences life but does not need to dominate it; most daily life is “normal stuff.”
Courage to connect: Engaging in conversations about ADHD can require bravery, but it often leads to powerful, supportive relationships.
Resources are plentiful: Organizations like ADHD New Zealand provide in-person and online support options.
No need to “reinvent the wheel”: Others have walked similar paths and their experiences can provide valuable guidance.

LINKS

TRANSCRIPT

JULIE: I’m Julie Legg, author of The Missing Piece and diagnosed with ADHD at 52.

JEL: And I’m Jel Legg diagnosed at 55.

JULIE: Welcome to ADHDifference. In this episode we’re going to be talking about community, tribe, like-minded others, and the fact that wherever you are on your ADHD journey you are not alone.

JEL: We attended a large… what would it be, it’s not a book fair is it? [It’s a book fair, yeah. It’s an author’s event.] Yeah, author’s event on yesterday Saturday in Hamilton here in New Zealand. And there were 100 authors there advertising and selling their books, and the public come in and explore all these books and make purchases. And it was just absolutely fantastic. Of the hundred authors there was approximately only two of them, us and the lovely people next to us, were non-fiction. Their book was not about ADHD so only 1% of the authors had a book about ADHD. So we got thinking. After having such a fantastic day, and having sold a number of books, and met lots of people who think they have ADHD, have recently been diagnosed and fit within the audience of what the book’s for, started realizing that, wow. Actually, you can randomly go to one of these places and of the people coming through, which I don’t know how many there might have been, a couple of hundred visited, I wouldn’t like to say exactly but it was certainly busy and well attended. We left feeling with a real sense of community that you know, you can randomly go into these places and engage. Once you’ve got that tool to reach out and engage you know, but it just reminds you that people with ADHD are around us everywhere. And sometimes you won’t even know that they’re there. You pass them in the supermarket and so on but yeah, you’re not alone and that’s the message today really, isn’t it.

JULIE: Yeah it is and I think going back to the event it’s yes, it’s an opportunity to sell books but it’s to meet the authors and to meet the readers and connect the two because it’s you know, there is a synergy there. And there’s lots of questions and it’s a chance to sort of really have those intimate conversations I guess outside of the book. We had multiple conversations as Jel said with those who had already bought the book and wanted to meet me, which was kind. We’re talking about The Missing Piece. So this was released in 2024, early last year. It’s for adults, women specifically, who are diagnosed as adults. And so we’re not talking about teens or children. Everyone, including myself diagnosed at 52. It’s not just my story but those of 30 plus others who also shared their sort of lived experiences with me, so from the age of 21 through to about 62, all diagnosed over that period of time. So we’re talking about a huge chunk of our life was undiagnosed and so there’s quite a lot to unpack. And I think the book itself is certainly “you’re not alone” when you read it. And again we’re talking about different stages of the ADHD journey. You might be wondering if you might have it. There might be a few sort of traits that you’re pondering on, and you may have done an online survey and thought “Yeah that’s pretty sure it’s me.” But a list of bullet points doesn’t diagnose you but really getting an insight into how other people think, it makes you realize that you are not alone. And regardless of which stumbling block you may have encountered, or are encountering right now, you’re not the only person to have experienced that. And once that’s understood, it’s not such a lonely place.

JEL: So the book is called The Missing Piece. It could just have easily been called You’re Not Alone, with a subtitle explaining the ADHD link. And what’s quite common when we meet people who buy the book, or have read the book and so on, they’re generally diagnosed much later in life. And often later in life than us. That’s not uncommon either. And in every case the diagnosis for them means “Wow. Wow. A light bulb switched on. Everything made sense.” Everything that’s talked about in the book we then get from another person, another living human being standing in front of us. Their story is the book. The book is their story because there’s so many shared experiences not just one unique as Julie says.

JULIE: Yeah I think I’m always at pains to say yeah, my story is definitely entwined throughout the whole book but it’s not just about me because there’s no one-size-fits-all for ADHD. And so having an array of lived experiences I think’s really good. Because you can spiral down and have some really low experiences, or you can spiral up and have some quite successful moments to be celebrated. And so one individual with ADHD doesn’t explain it to everyone else. So we’ve had readers who come through and highlight the bits that they resonate with and that have said “I’m going to show this to my partner because I can’t articulate how I feel and what’s inside my head but I’ve just read it.” You know, yeah. “Yeah that’s me” or “This is me. I’m on page 33. That’s me.” And so that’s really lovely I think anyway to be able to understand your brain and know that it’s… you’re not the only person in the world experiencing it.

JEL: So it got us thinking this ‘you’re not alone.’ I’ll keep coming back to this title of this episode, You’re Not Alone. You certainly can feel alone if you find yourself in a certain set of circumstances. Let’s hypothetically say you’re in your 40s or 50s, you’ve struggled with relationships, you’ve struggled with settling into a career or jobs and so on. And you may be in a relationship where you love the person you’re with but they don’t understand the way your mind seems to work and you know, you’ve got all of these elements that head towards the direction of maybe a late life diagnosis. You may be in a small team at work currently and there’s only 10 of you. You’re the one with ADHD but the other nine don’t have it. So there can be lots of things to conspire that make you feel alone, and misunderstood, and odd, and you don’t fit in, and it must be you. So I started thinking about things like when it comes to community with ADHD, the number of resources and ways of connecting with people out there to make you realize you’re not alone. Say you’re a religious person. We’re not, but say you are. It doesn’t really seem to matter which religion you follow or which denomination of a particular religion. Certainly I’m aware of people who move to new towns and the first thing they do is find the nearest synagogue, or church, or mosque. And they will immediately find they’re welcome and they have people who understand how they think and feel and what they believe. And they have community. And I’ve always thought you know, that’s a very powerful thing to have in your life. That ability to step into a community. If you move say for a relationship or work you know, that is an immediate community. And I’ve seen and heard of, known people settle in so incredibly quickly when they have that. Now with ADHD you know, you face some big challenges if you start a new job in a new area and you’ve got to sort of go through that whole process of getting people to understand you, but you don’t have a big tall building with a shiny steeple in the middle of town you can go to. But that community is all around you just the same. It may be online, largely. It may be in support groups. It certainly could be in a national organization such as we have one here in New Zealand. And there’s predominantly the main ones in each country and sometimes in larger countries you’ll have smaller organizations which are branches or offshoots or variants of the main ADHD organizations. And they will be full of support groups, community groups, spaces that you can go into where you can just be with people that get you to help you settle in, help you understand your new space and really… settle in is a strong word there, I think.

JULIE: Well let’s talk about that. ADHD New Zealand here in New Zealand, online they have a whole bunch of really helpful resources including groups. So they’ve got online communities, and we’ll talk about that as well, but there are physical groups where you can meet up and sit down have a cup of tea and have a good old chat. And sometimes just physically being in the same room with like-minded others with regards to ADHD is really good. Online can be perfect for those people that love it in that arena but it’s not for everybody. Sometimes the written word, just like in social media, can be construed wrongly or it has no emotion necessarily tied to it and it can seem quite cold. It might be perfect in some situations to dip in and see what’s happening in the online community, or you might want to take a rest from that. But yeah, there are physical groups that you can join, so do check that out. Also there is our ADHD radar that we’ve spoken about in the past. I think when you understand your own ADHD and you allow yourself to shine, and it might be being enthusiastic, or talking too much, or over-talking, or interrupting, you start being able to see some of these signs in other people. So it could be a random person at the supermarket and you don’t have to come out and say “Hey have you got ADHD?” You know, it’s not about labelling or diagnosing anyone but you can pick up on their vibe. And I think we’re really good at picking up energy levels and that’s a really good place to start. You’re more likely to have a really great conversation, albeit short, all be in the supermarket. But just connecting with someone who thinks the way you do, or the traits are very similar, is a really good start.

JEL: Yes. And I think reflecting back when people do buy Julie’s book, I think there is an element in there where they want to learn more about. And print’s a great thing because it’s been edited, and it’s been checked, and it’s been reviewed and so you generally should be able to trust what’s in a well-reviewed and checked book. There are heaps of other well-written books that can help, you know. It is a good place to start, something to have there, just to remind you. Sometimes pick up the book and read that chapter about a certain thing and how other people have dealt with it, struggled with it, sometimes not even. The book’s not full of all these clever answers and tricks guaranteed to work to solve every situation, and that’s not what the point of the book is. The book is a shared experience and I think really having a shared experience, and knowing other people think and see things often how you do and it’s a shared experience, is the whole point of not being alone. It empowers you to just brush yourself down, get up again and go “Okay this is what I’m dealing with. This is who I am but I’m not the only one like this so I don’t have to carry this whole load of ADHD myself. And the whole burden of it, and I’m the only person with it.” It’s simply not the case. Yeah Jules is right, you certainly it can be a bit gladiatorial online when you get into some of these groups. And people aren’t I think intending to be gladiatorial but I guess with certain social groups in social media with ADHD you do have the whole range of how ADHD is affecting people’s lives. And some people can be very successful with ADHD and quite don’t mind having it at all. And some people’s lives can be, quoting in the book “a hot mess” you know. They really are struggling. And so it’s not always best to bring these two groups together. You have to be wary of that, you know. [It can be quite polarizing.] Both have validity, both have their own shared… their own experience of it, and they’re both valid. But sometimes it can be polarizing.

JULIE: And we know, and it’s been reiterated by others too, that those with ADHD actually we work really good one-on-one with people or in small groups. Once you have a quite a large group it’s… it can be quite overwhelming and you know, it’s not quite the same vibe. Think of that in an online community. There might be hundreds of people online are willing to throw in their thoughts and comments at you. It might be more successful just having a good old chinwag with a couple of people. If you don’t, well that’s what gets…

JEL: Yeah. That’s absolutely true. I think what we took away from yesterday, and it’s not the first time we’ve had this experience, we’ve attended all sorts of author talks and a few of these book fairs, is if you’re finding you’re not an online person, or you find it too gladiatorial and intense, and I’m sure there must be coffee groups or small group meetings somewhere and there may be a walking group you know, for people with ADHD and it may be the little groups set up within certain environments that suit people of a certain age. So maybe middle-aged people like us. You… what I do find is when you’re meeting someone face to face and looking them in the eye and having a conversation, there’s a lot more respect for your relationship and their relationship with ADHD. It’s a warmer environment to discuss it and meet people, 100%, rather than online. So don’t give up on the idea of connecting with people but if you can find a way to do it in a small group, where people have got time to listen and look at the emotional response if they’re being a bit harsh. So I think people are far less likely to be keyboard warriors and harsh and unkind with horrible comments or comments that don’t consider the other person’s position when… Yeah. Well I think we pretty much can agree that’s more likely to happen with a keyboard warrior online than it is face to face with someone. And of course you get the great bundling online don’t you, when someone says something and others then suddenly becomes partisan and everyone bundles in on each side. Well that’s not going to happen as a small group.

JULIE: No. So we’re talking about online communities. We’re talking about physical groups. Support is, as we’ve discussed in numerous episodes, ADHD therapists, ADHD counsellors, ADHD coaches, family members if they really understand you. And I think maybe this is because some family members may not and may actually not really help the situation by dismissing it you know. Let’s say you’re emotionally overwhelmed and they’re trying to brush it off saying “Oh look, you’re just being a drama queen,” kind of thing. That’s not very helpful. But to really go and take your ADHD journey, and once you understand it, to share that with close family members so they can understand you better. So in the times when you do need support and you just need a listening ear you know, that they understand ADHD sufficiently enough just to give you their time and their ear. And sometimes that’s all we need.

JEL: And I guess another big word that jumps out that we sort of kept thinking of as we finished our day yesterday, was affirmation. Affirmation. Ah that’s interesting because you know we know there will be people who think they may have ADHD, or have been diagnosed who just don’t know how to tell people, or a little bit battling to deal with what it means and how people are going to react. But interesting being in that public space yesterday because we set up stall, and we you know, we don’t have the big banners like lots of people do the big banners. You know, we’re quite modest. Well the book’s very pink so it rather stands out. You can’t miss it in the hallway. It’s the pink one in the corner. But we’re already sort of broadcasting this fact and owning it. And I really admire people that then come up to us. I wonder how many people walk past. I think some couple did two or three times, and then get up the courage to come and over and start nonchalantly looking and then engage in a conversation. Because you’re almost taking part in that public banner, bannerism of saying I might be interested in this or you know, I was for a friend, you know. And so you know, there is a certain courage that comes and stepping forward with that. And I really admire that and but also respect and understand and we appreciate people may not have that courage to step forward at this stage and engage, you know. There may be, I don’t know if the word shame’s right or… about a diagnosis or possibly…

JULIE: Oh look, there’s… you know we’ve talked about that. I think we did an episode on Diagnosis. It conjures up a huge array of emotions you know. Some are absolutely feel validated and relieved and others feel really angry that it wasn’t picked up earlier. And it is an interesting time and this is why I think we call it this ‘ADHD journey’ because it really… Life doesn’t end at an ADHD diagnosis. In fact there’s a lot that happens beforehand leading up to the assessment and then certainly post post-diagnosis, it’s yeah, it’s a journey.

JEL: There’s certainly, if you read the newspapers a lot, you listen to talk back at all, you’ll find there are plenty of people out there that are very quick to say that there’s too over-diagnosis of ADHD, this, that and the other and that’s a whole different thing. We don’t ever… we’ll never get into that because that’s not, that’s a battleground. But I have to acknowledge you hear a lot of that but I can understand how some people would hear that message from parts of the media and places and think “I don’t want to be associated with that. I don’t want to get into that,” and so that will give you a sense of isolation, like anything where you’re different. Yeah, anything where you’re different, you’re going to have pressure not to step forward and say “Hey this is me. I think I can own this space.” That takes a degree of courage for some people. But in our experience, no we can sit there socially in that space and we’ve never had anything negative or no, and that’s what it’s like for us.

JULIE: We’ve really thrown ourselves into our ADHD diagnosis, me writing The Missing Piece but also we’re constantly learning more about it. We’re every week, we’re reaching out and talking to sort of experts on ADHD. It’s constantly around us and so we’ve come in leaps and bounds since our diagnosis.

JEL: We’ve even written an album about it. I’ve got to say there’s a good like an entire album of music, and we’ve released several albums, there’s another one coming up. We wrote an entire album and we nailed our colours to the mast. Bam there we go.

JULIE: And not everyone, not everyone is at that stage nor some may not want to. And you know, talk about labels too. Yeah we’ve got ADHD absolutely and yeah happy to talk about it with absolutely anybody but not everyone’s at that point, nor do they like labels and so we’re not pushing. We’re not pushing anything here. It’s each to their own but as long as I think you personally deal with it and you personally understand yourself, that is the… that’s really the main aim.

JEL: And equally we have to say in the same breath 99% of our waking hours are not ADHD. It’s not a conversation that constantly governs it you know. We’re just like everyone else. 99% of the time is thinking “Have we got some fish in for dinner? That tree needs pruning. I’ve got to do that work. That’s how am I going to solve that problem. I must…” You know, it’s just normal stuff we, just normal stuff. But ADHD is there constantly. It sometimes it raises its wee head and it’s sort of “Hello friend, you’re really there aren’t you” and other times it helps us and aids us. And sometimes it hinders us. It doesn’t go away. It just doesn’t go away. It’s like I don’t have the world’s best hearing, it’s not perfect. So “sorry, sorry, a bit of a dip in my hearing.” It doesn’t wake up one day and it’s great that day. And some days it’s not as good as other days but ultimately, it’s always there and ADHD is like that. But I guess all of this is about being concerned for those people who feel they’re alone with this thing called ADHD but you’re not. You’re simply not. No you’re not and we’ve talked about you don’t need to be. Let’s put it that way. You may be feeling like you’re alone. You’re allowed to feel that but you don’t have to feel that way. Let’s put it that way, yeah.

JULIE: And also there isn’t a need to reinvent the wheel with ADHD. There are so so many people have gone through whatever you’re going through. It’s just a matter of tapping into those experiences and so you don’t feel alone with that regard.

JEL: Certainly ended this weekend realizing we’re certainly not alone. And you know, technically we do spend a lot of time alone. We are rural. We’re isolated. But you can be lonely in a crowded room. You can be lonely in the middle of a… or feel alone in the middle of a city. And yeah, maybe that’s my takeaway point is we do not actually make ADHD the centre of our world but when it’s… when it’s really turning our world upside down and there are moments it comes along, you can very quickly feel alone. And yes, we’re lucky to have each other. So I am also really reaching out to those of you in a great relationship. You love your partner but they don’t have ADHD and sometimes there’s a bit of a struggle going on there. You can feel alone. But as Julie’s just says, there are so many resources and ways around it. How you feel and then whether you have to be stuck with that feeling are two different things. There are… you don’t have to be alone.

JULIE: And on that note, thank you for listening.