A photo of a smiling Lesley Spellman hugging her son Luke Spellman
Episode 247 – My ADHD Journey with Luke Spellman

My eldest son, Luke and I have always had a very open and honest dialogue which is why a recent diagnosis of ADHD left me wondering how I could have missed something so substantial and impactful when I work with people with ADHD each and every day. I’ve invited Luke onto the podcast to share his ADHD journey with us and it’s a fascinating listen.
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Transcript of this podcast episode
[00:00:00] Lesley: Today I'm talking to someone who I've spoken to many times in my life. My eldest son, Luke, and I have always had a very open and honest dialogue, which is why a very recent diagnosis of ADHD left me wondering how I could have missed something so substantial and impactful when I work with people with ADHD each and every day. I've invited Luke onto the podcast to share his ADHD journey with us and I can't wait to delve in.

[00:00:26] Voiceover: You are listening to the Declutter Hub podcast, bringing you tried and tested no nonsense tips and advice from the leading experts in decluttering and organising your home. Now, here's your host, Lesley Spellman.

[00:00:56] Lesley: Hello and welcome listeners. I'm Lesley. We're delighted you're here to join us as part of your decluttering journey. So whether you are brand new today or have been listening in for ages, we want to say thank you so much for being here. It means so much to Ingrid and I that you turn up every week to listen to and support us while we talk all things decluttering and organising. We'd love to help more people with their quest for a clutter free home, and our podcast is a fantastic way for people to be inspired to take action. We have a favor to ask. If you like what you hear, be sure to hit the follow, subscribe, or like button on your podcast player. Share us with your friends or share your thoughts on the podcast by leaving a review.

So welcome, Luke. I'm absolutely delighted to welcome you onto The Declutter Hub podcast, but this is not your first time. Back on episode 106, you came on with your brother and sister to talk about what it was like to be the son or daughter of a professional organiser, and people really, really loved that podcast.

A lot's changed since then. You've moved out, you've got a job. I think you had a job already then, to be fair, you know, you live in an independent life. And so let's catch up with where you are now. Why don't you tell us for starters, where you live, who you live with, how old you are, things like that.

[00:02:11] Luke: Mm-hmm. Um, so, uh, my name's Luke Spellman,and that's my mum there. I live in Chorlton, Manchester, so just down the road, really from where I grew up, but far away enough that it feels like a new experience. I live in a flat with my lovely girlfriend, Ellie. And, yeah, I'm, I'm currently, working in Warrington. 

[00:02:30] Lesley: Fantastic. So you graduated six years ago and, so four or five years ago, I think you got a job that you're currently working in at the moment, right, Luke? 

[00:02:40] Luke: Yeah. Yeah. So I've only actually worked at one company since I graduated, after a year or so of unemployment. I, I started working at the National Office of a franchise brand.

I did about four and a half years in the marketing department there. I did various kind of digital marketing roles,general marketing support, and did a little bit of communication stuff as well. And then actually I took a complete shift a couple of years ago and moved into the franchise development team.

and they're responsible basically for selling the franchises. So, you know, when, when someone wants to open up a location underneath a franchise brand,there's a, there's an aspect of selling that franchise to them. So that's what I'm, that's what I'm mainly responsible for now. 

[00:03:21] Lesley: And for fun, luke, what do you do for fun? 

[00:03:24] Luke: There's a few things that I. I would say my main, hobbies or outlets or whatever you want to say. I do a lot of art. I've always kind of done art, but definitely since I left uni, that's taken off, quite a lot of digital stuff. I've painted murals and things like that, so definitely art is a really, relaxing, therapeutic and fulfilling pastime of mine.

I love music and film and, and sort of want to consume those as much as I can. And I actually, run, dance music events with my friends as well and so that's definitely taken a lot of time these days. So, yeah, the, it's, um, sort of creative outlets, uh, I would say.

[00:04:07] Lesley: I think it's quite interesting, Luke, you know, because what you've got is, I mean, it's certainly not a double life, but you've certainly got this quite corporate side to you in terms of the work that you do on a day-to-day basis.

And then you've got this real creativity. And I definitely think you're underplaying, you know, you're not destroying a few things every now and again, art is a huge part of your life and you're very successful at it as well. So you've definitely got, different facets to your life. And, and it's interesting you know, talking in context of ADHD, that creativity is something that comes up with an awful lot of people, which we'll talk about a little bit, later.

Yeah. So that gives a little bit of context of who you are and what you're doing at the moment and where you're sort of sit.

So we're here today to talk about your ADHD. when did you get your ADHD diagnosis? 

[00:04:48] Luke: Last year. 

Last year. But it's certainly, it's certainly the case that this has been on your mind or on your radar for quite a few years. So let's go back to the point at which you considered for the first time that ADHD was a possibility.

Okay. so it, it literally did not cross my mind until I was 25 years old. there was never a thought that the way I was,the aspects of my personality and maybe, things that I struggled with could be attributed to that. And actually, I think that's why it hides in plain sight for a lot of people because there are quite relatable characteristics.

And the point at which I started to think about it was when it was, 2021 and I'd moved into a different flat with my girlfriend, Ellie, and we were working from home. And because throughout the Covid process there was, you know, when everyone was locked down, I think it was quite easy to,personally for me, I found it quite easy to settle into that period of lockdown because everyone was doing it together.

But by 2021, it didn't look quite that, that straightforward, you know, you were working from home, you unable to see your colleagues, but then there were certain things you were able to do, gigs and you could visit family and all this kind of stuff. and it started to get a bit, am I in lockdown or am I not?

Work's telling me I can't go in, but then, you know, I've, I've kind of got to do all these other things in person. And so I think that was actually the strangest part of Covid for me when it was kind of half, half covid and half normal life. So when I was working at home during that period, I just started to struggle with certain aspects of who I was, way more, I started to, I basically started to neglect aspects of looking after myself.

I would, it was pretty disgusting to say that I would maybe just not brush my teeth some days. I would, I'd put off having a shower, but I wasn't just putting it off thinking, oh, I'll, I'll do that later. I just, there was, I just didn't care. And it wasn't like a, sort of a depression I don't care. It was like a, i, I, I felt normal and I was fine, but there was something in my head blocking me from doing that task because it might be, it might be a struggle or uncomfortable or even painful to do. And that's kind of the feeling I, I'm getting. And then, I think, I think that became a bit of a problem for Ellie to live with.

You know, I wasn't helping, I was staying up till five or six in the morning just playing video games. And then I, that would mean I would then sleep really late. obviously if I had to be off for work, I would get up, but then I would be working on three hours of sleep and I would either be binge eating uncontrollably or not eating at all for a couple of days.

And so everything was just really out of whack and I couldn't attribute it to, say, anxiety, for example. I've always been an anxious person, um, quite generalized in it, in its form, and it just, it didn't seem to slot into that. And so for the first time ever with loads of time to spend at home and the feelings of things in my life being out of whack and struggling with things, I'd never really completely struggled with. I just started to do, I think what a lot of people do, which is start to Google search about stuff. You know, searches as simple as why can't I brush my teeth? Or,why can't I send an email or something? And then, you know, there's, it's, it's a drip feed at that point, because you don't actually get your answers straight away, but maybe you start to see lists of symptoms that start to apply.

But actually there's a few different types of ADHD. So you've got to explore each avenue and things. And then I think the algorithm kicks in because you've searched it, you start to get fed more and I think then passively over the next couple of months, I started to take ADHD as a potential very seriously.

So that, that was when. 

[00:09:11] Lesley: So that's how long ago now? So that's like a couple of years ago, um, since you first, first started delving into it and certainly since you started to make me aware of it as well. Yeah. And do you think that that was, so you've talked about things feeling out of whack and that there was basically then, you know, reading between the lines, it sounds as if there was a lack of structure and that you needed that structure a little bit more and you weren't quite sure about what you needed to do, so therefore you couldn't a hundred percent focus and so then it led you down this kind of neglect route, I guess. I mean, not in a really severe way, but it is being neglectful to your relationships and to your home and to your body and your wellbeing and things like that. Yeah. So do you think it was that lack of structure that led to that? 

[00:09:56] Luke: Yeah, so I didn't know it at the time, but now a few years down the line, you know, hours and hours of conversations later with professionals and a few years of consuming information about it.

I now attribute it to a lack of structure. Yeah. Because when I look back through my life, the reason I didn't struggle with those things, you know, I definitely would've been described as a lazy person. Maybe I would put the minimal amount of effort into things that I had to do, but I would put too much effort into things that I wanted to do, which normally are not sort of productive pass times.

As in the things, the responsibilities you have in life, they were sort of things that were keeping me from doing the responsibilities. But when I think back, I certainly didn't grow up in a strict household, but there were rules. There were expectations, the way we did things, the cubbies that stuff had to go in and how regularly our house was cleaned and things like that. So I think that provides a structure that's out of my control that really, really beneficial and, and, and strangely I would kind of rebel against that structure, but I've now grown to realise that I don't want structure, but it's what I need.

And then I, and then I think about the school that I went to, you know, a, a kind of a high achieving grammar school where in a sense failure kind of wasn't an option for students there. And again, it was positive, but there was extreme structure around that, you know, checks and balances all over the place.

And a clear communication with my mum and dad about that. So then it would sort of be reinforced at home and stuff like that. And then at university, then on reflection, the structure started to fade a bit because I was st I had then to be, had to be responsible for things like, you know, feeding myself daily, washing my clothes, making my bed, turning up to things on time, paying attention to my studies, that kind of thing. Those were things that I had done for me and now I don't. And so I did struggle in that area, but still there was an element of structure because financially I was supported by you and dad. Um, you know, the university had expectations about my attendance, and if I did slack on that, there were letters sent home.

Um, you know, things like that. So even though the structure faded away, there still was some. And I think then after, uh, you know, after, after uni, I then went into a job nine to five, which is the, the I now realise is such a, such a great form of structure for me. Um, And then sort of working from home in the first lockdown.

The structure weirdly came from the fact that everyone had to, you know, kind of everyone was doing the same thing. Like Friday nightswere zoom time with family and friends, you know, whoever you lived with, you would put loads of effort into how you spent your time and how you, how you found fulfillment when we weren't able to do the things we were used to.

So weirdly that had some force structure there as well. And then finally, when I get to this stage where kind of life's gone back to normal and I need to start acting how I used to act, but I don't have the nine to five and I've not got the managers and colleagues around me and, you know, I still can't really see my family as much.

So that I believe is the le the least amount of structure I've ever had in my life. And, being at home in your own four walls with no prying eyes, I think that started to just spiral. And I didn't realise, but there was nothing forcing me to be better and meet those responsibilities that I had.

So yeah, as I reflect through, I think structure is huge for me. and that's why that it really lacked structure and that's why it fell apart more than it had ever done. Um, and so, yeah. Yeah, it's a, it's a good point about structure. 

[00:13:47] Lesley: I think it's really interesting from my perspective, Luke, because I think there's a, there's a few key things.

Obviously I'm here as a kind of your moment and I'm, you know, also our listeners and people within our membership and so on. And so it's something that I come across quite, quite a lot and you know, and I look and go, how did I not know that? But I think there's a few, there's a few things that are relevant, I think.

Very high achieving. So to be fair, Luke is an exceptional student and always has been. And so I think that, and this is, and we're going back quite a long time now, so this is, you know, Luke was at school, you know, left school 10 years ago almost now. And so we're in a different place with schooling now than we were 10 years ago or 20 years ago when you were right in the heart of the educational system.

And I think the ADHD back in the day was almost attributed to people who would be more troublesome, you know, that kind of thing. And I think, but understanding thankfully, has moved on that that's not the case anymore. But I think you almost slip through the net a little bit from a school perspective, because there just wasn't either the.

It was for a certain type of person back then, which is not the case anymore. I think that, you know, and I hope you don't mind me saying this, but when you left home to go to university within a couple of days of you going to university went through quite a serious breakup with a girlfriend, with your ex-girlfriend.

And so the apart that we saw, and we absolutely did see that in the first term at university, we put down to the breakup rather than the lack of structure and the kind of sink and, and I'm sure both were contributory factors, of course. Mm-hmm. But I think that we kind of missed that. And it sounds like I'm making excuses, but I, and then that's not what I'm doing.

But you know, hindsight is a great thing. And in the same way that you can look back, um, you know, once you had that knowledge that you've got h ADHD, you could look back and go, what were the signs going through life? And you can go, oh, right. And, and it's the same for me because I've been through that process with you the last couple of years.

Um, you know, as a, as an observer more, um, and certainly as a confidant and things. And so I think it's, it's interesting to be able to look back and go, of course that is. And, and everything starts to fit into place. And I think that's the great thing about getting an ADHD diagnosis. It's something that, that you've been living with unknowingly for years is the fact that.

Everything makes sense then, and then you can start to take that and move with it. I want to talk a little bit, Luke, about your earlier years as well. So we've talked a little bit about the last couple of years we've talked about when you fit, felt, when things started to fall apart. What about your earlier years?

Cause obviously ADHD is something that is, is there from birth effectively. It's not something that you kind of get later in life. It's something that might be diagnosed later in life, but you have it all your life. So what sort of things do you think in your childhood now were signs of ADHD.

[00:16:38] Luke: Um, well, what you said before about once you're equipped with the knowledge, you can then look back in a different way. I think that's, that's, that's everything really with this, because if you're not looking at it through that lens, you just see behavioral characteristics, which absolutely could present in a neurotypical person and are actually deemed quite normal things.

But it's the persistence of them that I think is the, that's necessary for the diagnosis aspect because, you know, yes, everyone, everyone's late, but is someone, if someone's late every day and late for every single minute thing that they do late down from dinner, when my mum calls me for dinner, you know, late to go to bed late, to go to school, late for every lesson at school, late for plans late, getting home, all of these things, it's lateness at every level.

It's not just, oh, I was a bit tired and I was late this morning. It's every day and there's nothing I could do. And so once you're equipped with that information, like it has to be persistent. You can't just look at a behavior on one single day.

It's got to be there. Um, you almost get this kind of, I don't know, you get these goggles or you get this kind of cheat code that shows you the way ADHD looks and then says, now go and analyse your life. So what I'm trying to get at is that I, I didn't even know until I knew. And so I'm not surprised that you didn't know, because I think a lot of kids would show that they're struggling.

And I'm not sure I did. I'm not sure I even until, I'm not sure I actually did even struggle because it was different. It didn't feel, it didn't feel sad and I wasn't ridden, ridden with guilt and things like that. And so anyway, as soon as I put these kind of ADHD goggles on and I had the knowledge of what this looks like, I then started to go back because as my mum said, it's all it has to have been there from birth. Part of the diagnosis process involves checking to make sure that your childhood is that too. Cause if it pops up in later years and you never had those behaviors, it's probably something else. Or it could be something else. Anyway, if I think about my childhood and what I would attribute to ADHD self,stimming self-stimulation is huge in neurodivergent people generally.

And absolutely in ADHD, uh, stimming is, is effectively self-directed actions that, um, are, it's a way to regulate overstimulation or lack of dopamine that basically, is an ADHD. So I've bitten my nails to, as you know, quite badly for my whole life. Um, wouldn't really have said that was an anxiety thing in the early days.

It just became part of it, part of me, um, you know, leg shakes, constantly moving, like repeating phrases or kind of having outbursts and stuff. I think, I think definitely throughout my childhood, that was one. When I was at school, I had a serious problem with the authority of teachers. And I know my mum touched on kind of being a high achiever at school, and yeah, I was, but I don't really know how, and I know I'm, that sort of sounds like, um, I'm being cocky about my abilities and that's not the picture I'm trying, trying to paint.

But when I reflect, um, Revision is is something I've, I've struggled with the whole time and everyone struggles with revision cause it's boring, but I'm talking like single digit hours for a GCSE. But I think because the way I think I got around that was because I found lessons so boring, almost painfully boring.

The only way through was to focus in the lessons. Whereas I think the O the opposite side was true of a lot of other kids where the lessons would be the boring bit and then they'd make up fit with the revision. I think actually I engaged is found quite a lot of lessons, quite exciting and stuff like that.

But then if the teacher decided that I was talking too much, because I spoke all the time. I was drawing all the time. I was late all the time. If they had a problem with something I was doing, I would just take that as an excuse just to argue. So I think I. I think the problem with authority was kind of there throughout school.

I think that's kind of a big one for me. If I think about my past times,the things that I've, every sport I've ever engaged in until maybe the last couple of years, I've dropped, load of passion, loads of excitement about it, and then it just fades and I've got absolutely no care in the world.

I picked up guitar, dropped that,did trampolining dropped that, decided I was going to be a skateboarder, and a BMXer dropped both of those things. I've just done that. Got excited about something, dropped it, got excited about it, dropped it. That's been a constant. Um, talkativeness generally not the kind of argumentative side.

Just sometimes not being able to actually shut my mouth. I didn't realise at the time, but I think I was probably quite an anxious child. I don't think, again, I think, I don't think I was equipped with the knowledge that this, this feeling or this mindset equals anxiety. I, so I think it manifested in weird ways and it's kind of embarrassing, but there was a period in my life where like every time I ever got in the car to go for a drive, I would start to freak out about the accessibility of toilets.

And I would sort of, I'd go for a wee, I'd get in the car and I'd convince myself I needed another way and go. And I couldn't wait cause I didn't need one. It was a mental thing. But then that just went away one day. And the only thing I can attribute that to is just anxiety, just discomfort. Just the feeling of the unknown that we were about to step into.

And maybe it actually was the idea that there might not be a toilet if I need one. And so then I overcompensate with kind of a silly behavior. and so yeah, I think there's, I think there's quite a lot. Oh, the final one I want to mention is my emotions. they, it used to be described by my family and friends really until the last few years that there was, that there's a Luke mood, a mood that can bring down everyone else's mood without me even opening my mouth.

And when I reflect on these times, I don't know why I felt that way. Like I, there's not a thing, it wasn't like I got into an altercation or an argument that made me grumpy, or it's not like I just found out some bad news. It literally could be that I've had a wonderful day and then circumstances change or going down for dinner or something.

And now I'm in a bad mood inexplicably. I now know that's emotional dysregulation and I still get that now. But I used to get that load when I was younger, but there was no explanation. And so that then spirals because then people are telling you to, come on, cheer up, or why bringing the mood down, all that stuff, that's unfair.

you can't be grumpy with everyone. and then obviously weirdly that would keep me there. but I just didn't know why. And the same is true of uni and stuff. So, yeah, I think they're kind of the, I could keep going on about it and stuff, but I think, I think they're the ones, um, that, that I think about quite a lot.

[00:24:03] Lesley: I think. So I'm sat here thinking, I don't want to laugh or cry, really is I'm going to be honest with you because it's quite, 

[00:24:09] Luke: We've got to laugh. We have to laugh. Oh yeah, we do that. I don't reflect on this negatively. No, no, no, no. It sounds negative, 

[00:24:13] Lesley: But it's, I think, yeah, I think in terms of what that looked like for me and how I,as a parent, I would've always said the whole time, when people ask about your kids, and obviously you know as a parent you find, children are hard work at times.

Some are much easier to deal with and I would, there's this thing that used to come out of my mouth all the time, which was Luke would take 75% of my attention, uh, Leah would take then. I think I used to say like 15% of my attention. And then Nathan would take the other turn. Is that right? Does that add up to 100? Think so? 

[00:24:44] Luke: You just added up to 110 I think. 

[00:24:45] Lesley: Did I? Did I? Whatever. But anyway, whatever it is, and so I think.

[00:24:49] Luke: Oh no. You didn't, you didn't. 

[00:24:52] Lesley: I thought did I? Oh well. And I, and I didn't really know why and all of those things that Luke's talking about. So they're constantly moving through, you know? And he's absolutely right.

You know, constant doing this, this is the new big thing. Then he drops it. And there, there were times at which we got very disappointed with that because you'd invested a lot of time, a lot of money. It was quite successful at some of these things you had, there's certain things were like, why are you doing that?

You know? And we, we'd have taught, we'd try and get people to encourage him. So like lacrosse for example, you know, to try and get him and he was just not doing it. He started a business at 16, which in its, you know, that it was such a fantastic, probably earlier than 16, actually, Luke. Which is a fantastic thing in his own right?

But then just dropped it. Do you know what I mean? Mm-hmm. And so there was this constant moving through, you're absolutely right that there was a kind of Luke mood. We kind of call him the mood extract a little bit because he could, he would dictate the mood of a room when we were having dinner. So, um, for a, a lot of the week Steve was away.

So it was just me and the three kids. And so we, our dinner times that we were very rigid about and we were very rigid, you know, we were like, half five dinner time, we sit at the table and the mood of that dinner would be dictated largely by Luke. And that's been the case up until the last, you know, and so to some degree still going on, right?

You've had your d ADHD diagnosis, it's not gone away, but you've got strategies to deal with that as well. And so I think that, in terms of the, success at school and things like that, it would be, there was, would be some teachers who loved the talkative sort of Luke, who would, come up with great ideas would butt in because they liked the idea that it was a lively class with ideas.

And then there were other ones, for example, like the physics teacher who loathed you with an absolute passion, God love her. She just couldn't bear you at all. And that was because it was probably a different type of thing. So if it was a creative type subject, like philosophy, like history, all those kind of things, you would be great. If it was scientific, it was like, you had no interest in it whatsoever and you would cause mayhem in the classroom. And so, but this wasn't something that I was getting called in, I wasn't getting called into school for bad behavior. It would come up at a parents' evening and it would be like, Luke, Luke, Luke, where do we start?

Kind of thing. But of course they're like, but I've got an A* student here and so I'm just going to ride the storm a little bit because that's what ultimately they want. And so they were taking the roof with this smoother little bit. so I agree with everything that you said. But from my perspective, it was missed because I think because nobody really raised it with me because I just put it down to personality.

I just thought that's what Luke's like, you know? And to a large degree that is what Luke's like, but Luke's like that because of the ADHD or living with ADHD. And so I think it's quite interesting. So I think awareness is a big thing. Do you know what I mean? So we now know the, these things a little bit more.

And so, and as I say, hindsight is a great thing as well. And you can look back. And so I want to talk about the diagnosis process a little bit, Luke, because, explain a little bit about how that worked. Cause I was involved in that process as well. And just if anybody wants to go down that diagnosis route, what sort of things, we've touched on some of the kind of symptoms of it, but talk about how, how does the process of them finding out, how do they find out these things that you delve into, the types of things that you've mentioned.

[00:28:09] Luke: So I think. I don't know if everyone would agree me on this, but I wanted to go into the initial conversations, feeling a little bit prepared. So there was a period where I did my own research, I didn't conclude myself, and I remember saying, you know, I'm not, I'm, I'm not self-diagnosing, but weirdly it explains a lot about me.

And so I wanted to actually understand for sure what do I think the bad symptoms are? Because some symptoms actually don't present too negatively, and that's another reason why it probably hides a lot of people. If you are having bad moods, then that's just, that's bad and that feels negative.

And so you actually would recognise a problem. But if it's making you an art person and you're amazing at sport and you're excelling, then why would you try and find a problem in that? Anyway, I would go through some research. I went through a research process, tried to work out what I think first.

So that I felt equipped for the conversation, and again, the authority thing, I would've hated the process if someone was putting words in my mouth. In some ways, I wanted it to reflect what I thought I was open to, to move. But if someone just said no and dismissed me, or if I went in under prepared and talked about things that I might think are symptomatic and then they actually don't diagnose you because you've not spoken about the right thing.

So obviously that's my method and that might worry some people and so maybe don't, but at some point then you've got to go to the GP and it's as simple as telling them your symptoms and why you think you've got ADHD don't need to get granular about what type. Maybe if you don't even need to say ADHD but maybe you think you're neurodivergent at least be prepared, I think with a few, symptoms that you think. Then you would get put on a waiting list for,an ADHD specific clinic,at the time there was a b ig waiting list and I just ADHDd my way to the front of that queue and it took about 18 months or something. Yeah, it was quite a long time. I don't know if exactly 18 months, but it was a long time. And, um, eventually I got a, an email out the blue saying You've got an appointment.

And so from then you have got an initial conversation and then they set start to send you a few questionnaires and they're quite long, rightly they're quite long, and they go into childhood, they go into,what you were like at school, what your eating habits like drink and drug consumption. You know, they start to ask of every aspect of what being a human might be.

[00:30:43] Lesley: Including your birth as well, right? So how Yeah, how your birth was and stuff like that.

[00:30:47] Luke: Yeah, exactly how the birth was, parental reflections on you being a toddler and how quickly you started to speak and talk and all these things.

It goes into, the symptomatic stuff. So these are questions like,I can't sit still and, the multiple choices,strongly disagree, all the way to strongly agree, all the way from not very often to very often. And as I was going through this, it was very often, very often, very often that was quite a reaffirming part of the process.

That then is sort of like a hurdle you've got to get over. So that, that, that questionnaire is so long when it covers all areas of your life. Cause it's supposed to rule people out because like I said before, there might be explanations in other ways, might be anxiety. It might actually just be laziness.

It could be depression, it could be the fact that you've not learned certain things yet. I don't know. There's a, there are a lot of reasons why someone might be late or angry or absent minded or any, anything like that. Once they review that and they say, yeah, this person might have it, you then get another questionnaire.

And this one was more focused definitely on, on your involvement, wasn't it mum? 

[00:31:57] Lesley: Yeah. So I got the similar, I got similar questionnaire where I had to answer the same questions about you. I think it goes from, there's two questionnaires, isn't that this one that's 0 to 12 I think, or something like that.

And one that's 13 plus, that kind of thing. So yeah, you need somebody who, they say, somebody who's known you all your life, to be your kind of accompanying adult almost, isn't it? You did yours online. So we did that online stuff together, didn't we? yeah, so it was it, and basically they're looking for the two to align, aren't they, in terms of what the message is really. And it did align. And you were very high on the list for ADHD based on the questionnaires, weren't you? 

[00:32:35] Luke: Yeah, exactly. So once you've passed those questionnaire bits, And they think with some degree of certainty that you might have it. You then have the actual interviews and they're quite long.

I think one, one time we sat on the phone, mum and I, for two hours or something like that, and it goes through the same stages. But, at this rather than multiple choice answers, you get an opportunity to explain, you, you're going to comorbidities like anxiety and are you, have you been an anxious kid?

How quickly did you learn to talk? Explain some things that you're constantly worried about. What are your attitudes towards yourself? Again, how much do you drink? What's your sleep like? What, how do you pass time and things like that. After that, there is then another final interview, and that is the diagnosis interview.

In my case, that was the diagnosis interview. went over some similar questions again, but there were actually questions about the answers I gave at the last one. So the the person doing the diagnosis was diving in, I think a little bit. Making absolutely sure. And then on the end, on that call, I'm on that call for about an hour.

And at the end of the call, I got my diagnosis, which was ADHD, combined type, which was weird for me because I thought it was the inattentive type. So there's three types, I think ADHD inattentive type, ADHD hyperactive type. And they're on two, two sides of the spectrum.

And then in the middle you've got combined type. So the inattentive tends to present as, daydreaming, absentminded, time blindness kind of means like an hour could be five minutes in your head, or five minutes could be an hour. yeah, the lateness stuff. the passtimes that you have and things like that.

So that's like more of a mental version of ADHD. and then on the other side you've got the hyperactivity side, which I think is what most people think ADHD is. Can't sit still, never shuts up. there's stims, nail biting, picking hair, scratching, doodling, has to be doing something. Um, so that, that's that side. I thought I've got to be over here cause I'm actually, I like to talk a lot. I don't consider myself to be that high energy. I have my moments, but I'm not a hyperactive person by any means. so when I got told I got the combined type, I was quite surprised, but then makes a lot of sense because she then explained that the hyperactivity doesn't actually need to manifest physically.

And actually my hyperactivity was in, my thought processes. So I described during the interview that pretty much from the moment I wake up until the moment I go to sleep, there's a lot of thoughts that could quickly turn into anxiety, but at the very least, there's just cluttered mind. I try and follow a train of thought and another one comes in and hijacks it, and I try and follow that and it hijacks and that's kind of what just happens all day.

And so that was the high productivity, the fact that my mind wasn't really ever stopping and or struggling to go to sleep and things like that as a result, that was what she said. So yeah, I'm, I've got the combined type, so it's a long process and it feels like you're repeating yourself a lot, but it's just important to remind yourself that this is how you rule out, you know, whether it is or is not ADHD.

Because at the end of the day, if it's not ADHD, that doesn't mean you just go back to just getting on with it. It could be, I. It could be loads of other types of neurodivergences. Again, it could be anxiety, OCD, depression. Like there's, there's loads of things it could be. So it is part of the troubleshooting process to either rule it out or prove it is a thing.

And so I actually reflected on that, really positively. And actually after each call, I felt a little bit more equipped and I knew the makeup of my symptoms a little bit better as well. yeah. really long-winded answer, but that, that's kind of what the, the process was like for me. 

[00:36:33] Lesley: I think that's what this podcast is all about, Luke. I think it's about potentially you sharing your story, which is very fresh, really, you know, over the last couple of years in terms of,getting your diagnosis going through that and, hopefully it will encourage some of the people who feel that perhaps this is something that they might be living with as well to go down that route as well.

Cause it's not a scary, and it's been a very positive process for you. you're still working on that. We're going to come back after the break. And we're going to talk about the kinds of things that you've done to make sure that ADHD doesn't negatively impact your life. 



[00:37:07] Lesley: So welcome back everybody. So before the break, we were talking about the fact that the diagnosis that Luke's had of, combined ADHD has largely been a positive one. So Luke, have you got anything else that you want to expand on that? 

[00:37:20] Luke: Yeah, so I think one of the, one of the things you said before the break was about it, it not having to be a negative thing for people.

And I think when I've had a lot of conversations with people that I was going to seek out this diagnosis, there were some people that said, why? why do you need to know? if it's who you are, why do you need to know? I knew why I needed to know because I was struggling and I could see it getting worse.

You know, the, the more you ignore those things, the more it starts to root in like habits. The less you respect yourself, bigger feelings of guilt and it starts to, starts to get bigger and bigger. And so I started to recognise that it wasn't going the right direction. And that I needed to do something.

And I've always been a kind of person that wants to know what something is. And so rather than just thinking, oh, I might have it and it might explain it, I needed to know, but actually going through that process was the least scary thing ever because all I was doing was regurgitating things I already knew about myself.

You're saying things you already know, which you've never really reflected on in a negative way. So why do that now? And actually it's just an indicator. So as I'm going through these processes, talking about things that might have been a bit of a struggle and things like that, but rather than viewing it as a label, which is negative, I viewed it as quite a liberating one where actually it can explain the things that I give myself such a hard time about.

Um, feelings of guilt, feelings of annoying people, feelings of letting people down. The Luke mood would bring everyone else's down. There's just feelings of guilt everywhere really. And so actually by saying that, that's not a Luke mood, that's emotional dysregulation. That was really liberating for me.

And it's not to say it's liberating. Like now you are, now you're blame free and you bear no responsibility on the way you make people feel. But in some way, knowing that was something I had in me and always will, was the first step to knowing how to actually deal with that. It, it contextualizes it and stuff.

So throughout that process, which on the surface seems quite negative because it's like, how have you struggled with this and did this, did you know I'm talking about no sleep and all these kind of negative things. It was actually piecing together a very positive jigsaw for me. And so the one thing I want to say to people is if you are worried, I understand why there is stigma. People misunderstand what it is, but people misunderstand everything they do, and you can choose who you want to speak to about it or not. And if they're people who think, oh, they're lying, or they're this or they're that, in some ways it might be a good thing. I don't know. It's not always the case, but I think if you can actually frame it in the positive outcome,that you're going to get from it, the development, the clarity and things like that, I think it actually becomes an inherently positive thing and not a negative thing.

You are literally putting a label on what you already know about yourself ultimately. So I just wanted to say that, if that makes sense. 

[00:40:34] Lesley: Yeah, definitely. I feel that it's been hugely positive for you. And in the same way, obviously I've spoken to people about your diagnosis, and I think that then other people question me as well. why does he need that? Because he is, got a nice life, he's got a great job, he's got a lovely girlfriend, he's got a nice home. You know what, why? I would never have thought that. And and we've talked to as well about Sarah, Bickers, who you know as well, who's been on this podcast.

And sometimes when you see somebody, you're like, I just don't see it. But of course you don't see what's inside. You don't see what strategies they've got to deal with living with ADHD. And so I think, it's about how you feel. So it's a very personal, emotional journey, I think. You know, you've talked a little bit about strategies, Luke, and so I definitely saw with you while you were going through your research phase, you know, before you got your formal diagnosis, that you had put an awful lot of strategies in place yourself to be better.

I think that's increased since your diagnosis as well. So let's talk a little bit about some of those strategies where you were struggling and how you've made changes. Yeah. 

[00:41:41] Luke: Okay. So these are kind of strategies I'd implemented unknowingly, and I would describe them as just that's just how I do things but when I reflect and actually I start to learn about actual ADHD strategies, it's odd that I'd manage to work a few out, a few of them out myself. So a really good example, a daily one, is the way I approached to-do lists. So I've tried loads of types as I'm sure a lot of people have, and it was constantly, I think trying to find something that would keep my life the chaos of it all in check. You know, tried sticking out on walls and notepads and open pads on, on, on the, on your desk and things like that.

I tried a lot of digital ones as well, and digital ones do not work for me and I realise now why they don't, and it's because when it's up on the screen and it's there, you think, yeah, I can use this will be really useful for me. But then once you close that tab or you close that software, or you even close your laptop, that to-do list in my brain certainly cease to exist.

Whereas a notepad, it's a physical object, which, you know, can sit on a desk without looking too untidy. So you don't need to always like put it away necessarily. You can actually quite neatly leave it around your desk space and then you've got this physical reminder constantly that in there are the things you need to think about.

So now, like the way that I approach to-do lists at work and stuff, it's, rewriting a to-do list, constantly. Refreshing it is a process of bringing it back to the surface because there's a thing that kind of happens where if you look at a to-do list every day for a week, by the end of the week, it just starts looking like shapes.

You know, it's not actually words that mean anything. Like you got to do it. You're so used to it. It stops being a prompt. So by rewriting it, you kind of add a bit of intention into it again, and you bring it back to the surface. But then actually when I tick stuff off, I almost redact it. I use a very thick, permanent marker and I put a big black line through it.

I don't just put a little biro line through it. I block it out and block it out of existence because actually if it's there even crossed out, it's getting in my head. Like, I've still got to do it even though I don't, I've done it, but I, so I just think if I've done it, I may as well just remove those words from my life.

Once it's crossed out, I forget what's even under there. So that's one. 

There's a lot of things I could probably touch on here, but I guess I need to keep it brief one and it's probably less of a strategy and it's more of a, therapy is probably too strong a word, but kind of a relaxation thing that you do. I would quite often seek out, you know, drawing or, watching films, but not just watching a film, maybe spending a day, watching back to back films all day and stuff like that.

In some ways, that's me kind of avoiding responsibilities, and it is, but I think actually the reason I found so much comfort in those was because when you apply an active mind, it stops being a thing that's like stopping you from relaxing because actually it's doing its function. And so if you, if there are some things that you enjoy, so long as they don't impact other people or stop you from functioning or anything like that, enjoy them because actually it's quite hard with ADHD to find moments of relaxation and relief.

And so if you've got them in things like that are quite personal or in music or something like that, then do those, I honestly believe do those, they're still the things that when I've had a bad day bring me back around.

[00:45:21] Lesley: That sort of creative outlet. 

[00:45:23] Luke: Exactly. Potentially a bit of escapism too.

And I don't mean a bad form of escapism where you're hiding from stuff. It's escapism that allows you for a brief moment to just do you, to just completely do you. And, um, you know, when I'm drawing, it's, no one else is concerned what I draw or how long I spend on it or anything like that. And actually at the end of that, there's a feeling of pride.

And I think at the end of a really good film there's an analytical aspect where you want to think about it and you've just emotionally connected with the characters and things like that. I think there's like those good feelings that you can get if I'm struggling to get them outside of those things.

Well, I'm really glad I have those at my disposal. So it's not a strategy as such, but it's something that I'm now acutely aware of that throughout my life I've sought out those activities and I think it's because when I was doing those, I could truly, truly relax. And so, yeah, um, and I guess now we probably talk about the strategies that come from actually knowing you've got it, because there's a lot I suppose, that you don't even know how to implement, right?

[00:46:29] Lesley: So Luke, we've talked a little bit about some of the strategies that you feel that you innately did. Maybe not innately if it's a to-do list, but I love that idea. I really, really love the idea of striking out the whole thing. Cause I, I, I'm with you on that one. Because if I've got a to-do list with like 20 things on it, for example, soon as I've got 14 or 15 of those done, I have to then go onto a new page because it's too busy for me to look at.

And so it's a similar kind of process taking things out. Mm-hmm. So, um, just talk about a couple of strategies since you got your diagnosis. You've delved even deeper into strategies that you absolutely got that knowledge that you have ADHD. So what other couple of strategies that you've implemented since you got your diagnosis?

[00:47:13] Luke: So one that's really important is accepting some uncomfortable truths. I said before that I, I, I rebelled against structure. I find myself still wanting to rebel against structure cause it's, it's limiting and it's not allowing me to do what I want and things like that. But actually I've come to realise that whether I want to or not, that's my brain telling me I don't want to, in reality, I need it.

So lean into structure. You know, someone's saying, what do you want to do this weekend? Don't just say, oh, we'll work it out of the weekend because you probably get to the weekend and now you'll, you, you'll feel anxious and you won't do anything. But actually book it in. Be accountable and have someone expecting your arrival.

If you feel like you're going to let someone down, that is going to be the biggest driver ever. So I think. Just leaning into plans, responsibilities, you know, if you, if you've got a, if you've got a book, a doctor's appointment, just do it. The hardest bit is actually booking the appointment. The easiest bit will be going to it because it's in the diary and you'll have fear of annoying the GP or, or whatever,I think leaning into that, realising that structure helps. You know, for me, working from home always is not the way to go.

So going into the office knowing that, okay, yeah, it's not as comfortable as being at home, but that's where, you can do some long, long tasks that you otherwise won't be able to do at home. Cause being at home might be better for a day of phone calls, for example. So being equipped with that was really useful.

Sort of time management things. Um, so.

Harnessing effectively the digital stuff that you've got at your disposal, your phone is amazing. If I've got to put something in my calendar by hand, I'll never do it. But if I'm having a conversation in the pub with someone and they say, oh, you free on this weekend, I just say, Hey Siri, set a calendar event for these dates between this time and remind me one week before and two days before.

So you've sort of got the week reminder that gears you up for it so it doesn't come out of the blue. And you start to think, oh, and maybe you've got, had to get presents or anything like that. You've actually got some time to prep. And then you've got the reminder close to it, which says, don't forget about this sort of thing.

So that's been huge for me. Building in the kind, the kind of ongoing, calendar structure and reminders and things, relying on your brain is the worst thing. It's a fallacy. And then the final thing I think I want to mention, and there's tons, but the final thing I want to mention is,one strategy is learning what your makeup is.

Because actually, if you learn that you score quite highly on, say, emotional dysregulation, and it kind of, you, you might get that kind, quite liberating feeling of knowing that's what it is. When you are in those moments where you've got an inexplicable bad mood, you'll find yourself actually saying, oh, right now I'm experiencing emotional dysregulation.

[00:50:15] Lesley: And strangely, that takes some pressure out of it all because you sort of minimize it to a symptom rather than like, oh, everything's wrong in the world. Like that's huge and the symptoms quite small. And so yeah, one of those is actually harnessing the labels and the symptoms that you've been given, rather than just thinking of it as a failure of yourself. And if you take some pressure off, then I think other things can get easier. I think from my perspective, Luke, you know, looking at your growth over the past few years, you know, being party to you, delving back into it and loads and loads of conversations that we have because this is something that you and I can talk for hours about and love to talk about and, but I think the big problem for me and the way that it manifested with my child ultimately, and we're always going to think of you as a child, is the horrendous self-loathing that you felt about not being good enough.

And so that's the positive for me is learning, being self-aware and knowing that it's not your fault that you are like this and there's a reason for that. It gives you an explanation so you can then make those positive steps forward to have the life that you deserve going forward. And I think it's fantastic to be able to do that in, when you're a young person in your early twenties or late twenties now, right? Um, late twenties. Late, yeah. Yeah, definitely late. But you're not doing this at 50 and I still think it's worth doing that when you're 50, 60, 70 as well, but I think if you can get there a little bit sooner, um, to this point and it's going to be, helpful for people.

Yeah. So there's one thing that I wanted to talk about just before we go, which has very much been in the news, in the UK recently, and it's a Panorama program, which has delved into, it's a bit of a fly on the wall type thing. Now, I have to add that I've not actually watched it. I've just read a lot about it.

And so it is on the list of things to watch, but what I've seen is the fallout of that within the ADHD and the professional organising communities of. Basically it's a program, isn't it, Luke, do you want to explain the program, the premise of it? Perhaps it's best to come from you as soon as you watched it.

[00:52:11] Luke: Yeah, so it's basically, panorama style investigation about private clinics. So I think it's Neurodivergency in general, but it ends up focusing on ADHD a little bit. and I think this gentleman and I've only read articles and forum posts about it as well. I've not watched the full thing in its entirety. 

But I think effectively a guy goes in and makes up, symptoms that he has, he clearly has researched ADHD, maybe he's spoken to someone who's got it. and he goes and regurgitates that and ends up going to three different private clinics and actually being diagnosed with ADHD three times.

And what that's led to is a bit of fallout really, where.

There's, um, you know, fears that ADHD is being overdiagnosed, um, and actually misdiagnosed for people that don't have it, and might actually just have other explanations or just don't like doing those tasks and they're trying to find an excuse for it. And so that's the way it seems to have gone on the internet.

There's a bit of a reaction to it. Obviously this comes off the back of already seeing it come into light, like through, through TikTok, and through Instagram and things like that, that actually talking about neurodivergencies and ADHD in particular has become very trendy. And it's quite, I think I've touched on this a couple of times.

The symptoms are very relatable that, you know, it's not, it's not non-verbal. It, it, it is, you know, it's not a tick that actually don't really present in neurotypical people. These are things that do present in neurotypical people so people can relate to them. And so as you are kind of scrolling TikTok, and all of a sudden this video comes up and it says, are you late to things?

And do you like,do you like music and drinking beer? Then all of a sudden someone goes, yeah, no, that's me but that's not talking about the persistence. It's not talking about the actual nuances of that. mum touched on the self-loathing, the guilt, the anxiety underneath that.

And so I think it dumbs it down to a very, very relatable sentence that then leads to this thing. So I think there's kind of two things going on, which has led to a bit of fear that this is being misdiagnosed and things like that. 

[00:54:25] Lesley: I think that, from what I've seen about it, is that what it's become is very, when we've made so, so much kind of progress forwards, we're, I think we're 10 years behind, adult diagnoses, of the US or something like that in terms of the kind of numbers and things like that.

And I think, you know, it was very validating for so many people. And certainly in the communities that I work with, I see a lot of it, and people even just listening to Ingrid and I listening to these podcasts, you can see the light bulbs going on for people thinking, is that potentially me?

It can be, it might be them, it might be someone that in their family. But what I've seen is that, for people to then suddenly suggest that people are being misdiagnosed or overdiagnosed or people are going for to be diagnosed because they fancy it. It's very invalidating and very distressing for people. And so I think it's been a real negative, it's in negatively received in the ADHD community quite understandably. 

[00:55:24] Luke: When I first started seeing it going on,I did worry a little bit that actually this could, this is the kind of thing that, that people who actually don't understand ADHD in its entirety, could very easily fall into the trap of thinking that actually I'm looking for an excuse.

or, why did you need it anyway? you've, you've got a job. you've got a girlfriend, you've got all these things. Why do you need it? Your life seems good, so why are you seeking out a diagnosis? I did get worried that people would start reflecting on it like that, but actually then I went through a bit of thought about it and thought, sure, people go into the GP with lumps that aren't there, phantom pains. This happens in a non-mental health place. Bumps can go from being cancerous tumors to a benign, inflamed lymph node. And actually it's a troubleshooting process. So I ended up hearing about this panorama thinking, I don't really know what that's told me, because in reality, what that's told me is that if someone goes in and says these are the symptoms I've got and they are banged on with ADHD. And you combine that with a slightly outdated NHS approach to ADHD, like you just said, mum, we're like 10 years behind. We combine all of those things. I'm really not surprised someone has been misdiagnosed, they've said the right things, they've got tics next to it.

So actually end up being quite affirming in a way that no, no, no, I'm not going to start believing that I don't have ADHD or that I'm looking for an excuse or anything like that. If there's people that want to do that's fine, and that'll happen all the time. If there's, professionals who don't know fully about ADHD themselves and they're misdiagnosing, it's a separate problem.

Do I think the clinic should be shot as a result? No, because this has absolutely changed my life. It's allowed me to reflect on myself in a different way. So the internet will be the internet, and I've managed to find a way to detach a little bit. If I have conversations with friends and family and they want to tell me I'm wrong for doing it, I tell them why I think they're wrong and,it's your choice and I think if you think this is going to help you and you think there's something wrong, go for it. If you then get told that it's not that, it's troubleshooting and you've ruled something out and that's positive. You're not back to square one.

You're actually, you go back to not being diagnosed, but you go, you've got a list of things you can't be. And so, yeah, I think Panorama will do what Panorama does, which is try to expose things. And do we think the NHS is bad because doctors kill people sometimes. No. And so I've got quite strong feelings the other way, as I'm sure you can tell.

[00:58:00] Lesley: So I just thought that we would talk about that a little bit just cause it's very newsworthy at the moment. It's something that's definitely prevalent in the ADHD communities, particularly in the UK. So this has been a little bit of a longer podcast than normal Luke, and that's typical because you've got two Spellmans together.

We could talk all night. Of course we could, but maybe we need to bring this to a close. So I just wanted to say to close really Luke, first and foremost I'm so proud of the way that you A, dealt with your ADHD journey and tried to really find the best way for you to live with ADHD. Of course it goes without saying that I think it'll be so, so helpful to our listeners to hear it from the horse's mouth as it were. You know, you very much, this is very fresh to you. And so you'd be very open and honest about the types of things that have helped you. And it will of course be very different. Cause neurodivergences by their nature are divergent. Right. And so it's going to be very different and it's going to appear in very different ways to different people. Yeah. And I think it will also be very validating to a lot of people and I, and hopefully encouraging of them to take that next step into potentially going for a diagnosis or talking to somebody about this.

So I want to say a huge thank you to you for coming on the podcast. I'm sure this will not be the last podcast that we do, because you've got a lot more to say as we know. True Spellman. 

[00:59:17] Luke: I do, I do. Well, uh, I mean, thank you for having me on. Um, It, it is, it's been, I don't really get an opportunity to talk in this way, so it's actually been really useful for me as well.

And so I, I hope that if there is someone out there who thinks I've got these inexplicable thoughts in my head and I don't really know what's going on,if you relate and you think it's been helpful, then I think that's why I've done it. And so, um, yeah, I've got a long journey ahead of me still.

I'm not chasing perfection. I just want to be better and I, I'm taking accountability for the things that are ultimately out of my control, but it, by, by taking that accountability, I'm trying to improve and not being too hard on myself when I do have those really bad days. So, yeah. No, I, I, I hope that, I hope that there is someone out there that, that relates. 

[01:00:07] Lesley: Definitely. So if that's you and you relate to this and you feel that you are encouraged to take that next step, do you tell us about it in the show notes? You can go to declutterhub.com/247 and tell us your thoughts, or you can add it to our posts on social media.

So all that's left for me to say is thank you so much and we'll see you next week. 

[01:00:25] Luke: Thank you. Bye. 

[01:00:26] Voiceover: Thanks so much for listening to the Declutter Hub podcast. Don't forget to subscribe to us in your podcast player so you don't miss an episode, and we'll see you next week.
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Episode 106 - What I have learnt from my mum.
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Ann M says:

26 June 2023 at 2:11 PM

I listened to Lesley and Luke discussing his journey to a diagnosis of ADHD and must say how sensitive and honest a discussion, plus difficult for Lesley as his Mother, this must have been.
My nephew when young was similar to Luke, fortunately I was able to see things and asked my Brother and his wife to take him to see his Doctor and ask foe a diagnosis whilst still in primary school, prior to him going on to further education at high school level.
I hope this Podcast enlightens not just listeners, parents, or the individual who might now be in later adulthood to seek a diagnosis.

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1. Lesley says:
  
  26 June 2023 at 2:46 PM
  
  Thank you so much, Ann for your kind words. I'll be sure to pass them on to Luke.
  
  Reply
Episode 247 – My ADHD Journey with Luke Spellman

Episode 411 – When Creativity Breeds Clutter with Inner Hub member Lori

Episode 410 – 10 Things you Don’t Need this Summer

Episode 409 – Is TV Decluttering Helping or Harming?

Episode 405 – What your clutter is doing to your mental health

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