Podcast – Life As A Researcher Living With ADHD

Voice Over:

The Dementia Researcher Podcast, talking careers, research, conference highlights, and so much more.

Dr Gemma Lace:

Hello and welcome to the Dementia Researcher Podcast. Today we're talking about life as a researcher with ADHD. Hello, I'm Gemma Lace and I'm a Dementia Researcher and associate dean at the University of Salford. I'm hosting today's episode because this is a topic that feels really personal to me. ADHD is something that has shaped my own experience of work and research, and it's something I know many people are navigating quietly. In this conversation, we want to better understand what ADHD looks like in practice, how it can affect people differently, and how researchers have found ways to work with it at different stages across their career. We'll also talk about what has been challenging, what has helped, how people have found ways to succeed in research environments that are not always designed with neurodiversity in mind. I'm joined today by Dr. Eric Hill, Kalliopi Mavromati, Natalie Wicket, and Kate Harris. Say hello everyone.

Natalie Wickett:

Hi.

Kalliopi Mavromati:

Hi.

Dr Kate Harris:

Hello.

Dr Gemma Lace:

Thank you all for joining me. We've already said this is going to be fun and chaotic, so we might all break out into spontaneous laughter. So, I think we just embrace that from the beginning. To start us off, could I ask you all to briefly introduce yourselves? So, Eric, could I start with you?

Dr Eric Hill:

Yep. I'm Dr. Eric Hill. I'm a Reader in Cellular and Molecular Neurobiology at Loughborough University. I was diagnosed with ADHD probably about eight or nine years ago.

Dr Gemma Lace:

Fabulous. Thanks, Eric. Kate, do you want to go next?

Dr Kate Harris:

So, I'm Dr. Kate Harris. I'm a Senior Lecturer in Interdisciplinary Drug Discovery up at Newcastle University, and I was diagnosed with ADHD about five months ago, so it's all very new.

Dr Gemma Lace:

Fabulous. Kalliopi, do you want to go next?

Kalliopi Mavromati:

You can call me Kalli. But hi, I'm Kalli. I'm a Researcher at the University of Glasgow. I research dementia and I create scales for measuring life after stroke. I was diagnosed with ADHD about two years ago at 23.

Dr Gemma Lace:

Fabulous. Thanks, Kalli. And Natalie.

Natalie Wickett:

Hi, I'm Natalie. I'm at graduate school at Simon Fraser University in Canada. And I got diagnosed with an ADHD about four years ago, I think when I was 20. And I'm interested in researching dementia and strength training and physical activity.

Dr Gemma Lace:

Very cool. I'm already getting imposter syndrome now because I have been in and out of the diagnostic procedure for about seven years and now, I've just abandoned it and given up all hope. So, I think I'm the only one who's not formally diagnosed.

Dr Gemma Lace:

Okay. To begin, could you explain what ADHD actually is for someone who may be hearing about this properly for the first time? Eric, can I come to you first for that?

Dr Eric Hill:

Yeah. ADHD is a terrible name. So, it stands for attention deficit hyperactivity disorder. And so, what we need to understand is it's a lifelong neurodevelopmental disorder. It has a huge genetic component to it. And around about two to 5% of all adults are expected to have ADHD, but only about one in nine are actually diagnosed with ADHD. And I think when we think of ADHD, I was diagnosed with a combined inattentive and hyperactive and so we think of often the hyperactive side of ADHD and not necessarily that inattention. And it's not necessarily that we lack attention, it's that maybe our attention isn't directed at the right place at the right time. So, you think of people following a particular task and maintaining attention, particularly if it's something that they're not necessarily interested in. So maybe you are not listening to someone when you're being spoke to directly because you've got distracted, to the kind of more hyperactive side where you are fidgeting, you're tapping, squirming, biting your nails, leaving your seat when you'd probably be expected to stay sitting down, and that kind of feeling of restlessness and you're almost like you're driven by a motor. And those are some of the kind of things that they look at when they go through the diagnostic pathway review.

Dr Gemma Lace:

So, you mentioned there, Eric, that there's often that focus on the hyperactivity element. So, Kate, I'm going to direct this one at you. Do you think that ADHD is misunderstood by the wider population?

Dr Kate Harris:

Oh, yeah. Also, I was really loving, Eric, when you were giving your descriptions, it was properly taking me back to the questionnaire that they make you answer. The bit was like, oh, do you feel like you're driven by a motor? I'm just like, yep, that's memories right there. Yes, I think it really is. I think that there's a huge amount of development that's happening now where people are starting to understand more, but it's also a relatively new thing. It's not new in terms of people have heard about it, but for it to become quite mainstream is quite new. So, we're starting to understand more and there's obviously our generation are the ones that are really learning about it. But obviously it's hereditary, so our parents' generation and our grandparents' generation were like, what is this nonsense? This was just normal. And then they obviously forget that what there's normal maybe different to what is actually normal. I still find it hilarious that they go to your parents to ask them if you were normal growing up when there's a 70% or 80% chance that they were not normal growing up. But anyway, that's a discussion for later in the podcast.

Dr Kate Harris:

I think a lot of the misunderstanding is about that hyperactivity and not necessarily the inattention and the fact that you can simultaneously be both distracted and hyperactive and hyper-focused< It's not intentional. None of this is intentional. It's just there's not enough dopamine for us to do whatever you want us to do at any one time. A huge aspect of it, at least from perspective of myself and people I know is about internal emotional regulation as well. People misunderstand that side of it very much and controlling impulse and controlling the ability to not speak even though you really don't want to speak, but it just comes out. So, a lot of that. So that can lead to you being the disruptive one in the room or the one that's not serious or the one that's always late because they don't care or poor attention to detail, which in the sciences does you such a solid when you can't pay attention to detail consistently. So yeah.

Dr Gemma Lace:

I think you are absolutely right there. And I think sometimes what is misunderstood as well is how it can manifest differently in different situations as well as differences between different individuals as well. So, Kalli, I wanted to ask you about some of the things that you just heard there from Eric and from Kate about how maybe some of the things that they had experienced as part of their ADHD, what about your individual experience of individual experience of ADHD?

Kalliopi Mavromati:

Yeah, I 100% agree with everything that's been said, in case my nodding hasn't made that clear enough. I'm a serial nodder. Whenever I agree, you'll see it. But yeah, I think for me, because I... It's difficult for me to discuss. Thinking about my past before I was diagnosed is actually quite emotional. But for me, as someone who has both autism and ADHD, it has been even just understanding what ADHD really means because it's very tangible to explain to my family and my friends and my colleagues has made a massive difference in my life. At the same time, I have experienced ADHD as a true gift and at the same time a bit of a burden. I have, as I probably think many people with ADHD think, I have many times thought that there was something to be fixed. And in fact, even after I got my diagnosis and started meds for about the first year and a half, I thought I had to just fix my ADHD.

Kalliopi Mavromati:

And then it's only been recent months, which is well into the second year of me using stimulants, short-term and modified release I should add as well, I'm finding that I don't actually want to change it. Instead, I just want to find a way to regulate it so that I can continue doing everything I want to do and everything that makes me happy. But that does mean that, for example, when I'm in hyperfocus mode, and thanks for bringing that up, Kate, I was thinking about this, as I've been in the last two days actually, I need to just let my brain do its thing. And then I will use my meds after when I'm calmer and I'm struggling to get out of bed in a week or so. So, I guess I've gone over a gazillion thoughts there. But for full transparency, I made the decision to not take meds before this conversation so that I could be visibly unmasked because I never had that when I was growing up and I thought it would be nice to be that person.

Dr Kate Harris:

That's [inaudible 00:09:31].

Dr Gemma Lace:

Kalli, thank you so much. Thank you so much for sharing that. It's really brave and you are amongst friends here and your words are likely to really hit home with everyone who's listening. So, thank you so much for your bravery. Kudos to you. It is quite difficult to be open, isn't it? I know when I was growing up, if you had ADHD, you were kind of a naughty kid. I know my mum was really adamant about not being labelled with anything. I was described as a butterfly and I thought that was a much nicer even because I was essentially, I don't even have the words to say what, a Tasmanian devil running around interested in everything. Some of the words that you mentioned, Kalli, so I just went off on my first one of whatever, Kalli, you mentioned that hyperfocus. I wonder if you or anyone else in the room just wanted to explain what we mean by hyperfocus. Because I think we all get what we mean by hyperfocus and it might be useful for the non-ADHD community to understand what hyperfocus looks like and also what happens after a period of hyperfocus.

Kalliopi Mavromati:

As a neuroscientist, I've been very intrigued by that because I never was taught that in my degree, not at any point. But from everything I've understood in the last couple of years, hyperfocus is it's also hormonally determined, especially for women. We want to make that very clear. But it's basically, it's not a state, it's just your brain just kind of starts being a little bit hyper, but not in the physical hyper way, in the I have a lot of thoughts, and I want to do the things I'm thinking. For me, a lot of the time it's doing science, a lot of science very intensely without wanting to stop. And if I am interrupted because I have to eat or I have to sleep, it actually feels uncomfortable. And sometimes that hyperfocus can look like me having all-nighters. It can be stress-induced sometimes for me because I'm no longer in education formally, it's not induced by stress, it's more by creativity and whenever that happens to align with that cycle of my menstrual phase.

Kalliopi Mavromati:

But yeah, it's that kind of thing. And then afterwards it's your brain has used up all of the dopamine it has to help you initiate tasks because, as Eric said, it's not that you don't have attention, it's that you have it spread out in a lot of places and there's not quite enough dopamine for you to focus it in one place and actually act on what you want to do. So, once it's all been used up during your hyperfocus state, your kind of then tend to crash in my experience. And it's a little bit like it's harder to do the basic things. Eric, what do you think?

Dr Eric Hill:

Yeah, I think a lot of what's not described in the diagnostic criteria when you're talking to professionals and other people, it's that, the link and all of that to your executive functions, those things that I guess most people take for granted, but kind of your inhibitory control, your self-control, your ability to hold information, your working memory, and your cognitive flexibility are all disrupted. And those links to where you get reward from something and that reward can differ wildly to doing something really boring and inane. For me, a lot of the time I love reading about science sometimes and I'll just go into a rabbit hole of science and then I'll emerge and it'll be hours later. And knowing I'm doing that, I've got maybe tons of marketing to do in the background and I'm getting reward from one thing and not from the other. So, I'm just focusing on the thing. And then having that time blindness where you don't notice because it's difficult to shift your attention. And I think for a lot of people with ADHD, it's that shift in attention from that hyperfocus where you get reward to something that's not necessarily that interesting to you or that rewarding at that moment unless there's those other things like fear of failure and embarrassment and stuff driving things forward.

Dr Eric Hill:

And I think the way people present the diagnosis rates between males and females is very different. And that's not based on any biology or genetics. The occurrence is identical. But I think the presentation is different, that often women don't often show that hyperactivity or it's frowned upon, whereas me running and jumping and throwing myself at trees, that's fine, that's what boys do. It's just being a lad. And my parents said, "You have got an ADHD. You're just like your dad." And I was like, yeah, there's a reason for that. He'd get the same score as me, I imagine. So, I think that how the social representation comes about as well and what people are expecting to see. And then that kind of internalisation, that internal hyperactivity, people might not see that, but it's still there. So, I think people understanding there are different ways it's presented, but it's still those very similar symptoms as well.

Dr Gemma Lace:

Yeah. Cheers, Eric. Natalie, what about you? We spoke a lot about how the symptoms manifest in different people in the room, so what about you? What's your experience of ADHD?

Natalie Wickett:

I actually wanted to touch back on ADHD being misunderstood and hyperactivity and what Eric just mentioned about the differences in presentation between males and females. And that as a girl, I find that I have that more internalised hyperactivity, and I might be completely still, but my mind is going and going and going and that kind of difference there, which I've spoke about with many of my friends who have ADHD as well. And I think that can make it very misunderstood for girls in [inaudible 00:15:20].

Kalliopi Mavromati:

Question, Natalie. I was thinking recently, I was noticing that when I'm around and during my period, I find that a lot of my internal hyperactivity is emotional. So, I tend to think about not nice things and things that make me really sad. But then when I'm out of that part of my cycle, like I am now, it's more about things that make me actually want to act. And sometimes I do get a little bit of physical hyperactivity, but still the internal hyperactivity is more creative than it is emotional. Do you find that at all?

Natalie Wickett:

Yeah, I did actually want to talk about the menstrual cycle as well. I'm glad you brought that up because that's where I was originally going to go with my point there before I lost my train of thought. But in my follicular phase when oestrogen is higher, I do feel like my focus is much better. I feel better in myself. I mean most women do, but my ADHD symptoms I feel like are partially relieved and they get much worse in the luteal phase. I struggle with my mood much more. I struggle with my focus much more. Everything feels much worse. Sometimes it even feels like my medication just doesn't work in that part of the cycle.

Kalliopi Mavromati:

That is so true and you can't predict if it's going to work or not. It's kind of a coin toss.

Natalie Wickett:

Yeah.

Dr Kate Harris:

They had to give me an extra booster for when I'm on my period because nothing works. My long release stuff doesn't work. So, they literally had to dial up my meds just for that week.

Natalie Wickett:

Wow. Yeah.

Kalliopi Mavromati:

I tried not taking them when I find that they're making me a little bit hyper. And actually, on those days just before my period, actually that seems to work better, but then it's again a coin toss. You have to take it one day and find that it's, oh, it's making me too much today and then you can't predict it. Those few days are just totally a coin toss.

Dr Kate Harris:

I've been getting the hang of it. I've only just finished titration, so I'll let you know in a year's time.

Dr Eric Hill:

I think it's important as well for people that the links between oestrogen and menopause, I think a lot of people get brain fog, memory loss, and also realising they've got ADHD at that point and that they're, again, being misdiagnosed is quite important.

Dr Kate Harris:

I've found out after having children. Literally because the two for girls are often children. So, if you're not found out sooner, found out that was the wrong phrase. It's children or menopause, you're right. Because I had no idea. This was a total blindside to me two years ago, but then I had kids and my whole brain fell apart.

Dr Gemma Lace:

Yeah. So, the compensatory mechanisms, you get them all together and then children or menopause, all that shifts and that blanket of oestrogen and hormones changes and then whatever mechanisms you were using as a bit of a survival tactic are just that rug is whipped around, and so it changes everything.

Dr Kate Harris:

I mean honestly with kids, do you have time for yoga to stop you buying a million things on a random website? No

Dr Gemma Lace:

More about the panicky eating custard creams in secret so that you can do something. It happens.

Natalie Wickett:

Yeah, I always used to eat caramel digestives when I would study to try and help me.

Kalliopi Mavromati:

I have a friend introduced me to volume eating and she explained that basically if you just eat foods that are very chewy, even if they don't have a lot of calories, so think carrots, popcorn, it doesn't even have to be healthy, it can literally just be eating popcorn or tortilla chips. Because I don't know about you, but I stim with chewing a lot of the time. So that's also why I lost a lot of weight once I started meds.

Dr Kate Harris:

Amazing.

Kalliopi Mavromati:

Just chewing, it helps a lot. So, something I tried was when I first started, I would take my meds during the week and then not in the weekend. And I realised that if I make sure, I have popcorn and baby tomatoes or carrots and cucumbers in the house, I could literally just be constantly chewing while I watch a movie and I can sit still to watch it because I'm chewing the whole time. And it doesn't fill me up too much, but I still kind of feel like I've eaten. I don't know. The caramel digestives is a great idea and I'm going to try that on my next office date that I go.

Dr Eric Hill:

I was also going to mention that the key kind of diagnostic criteria when you go through all the questionnaires and you tick them off and your doctor looks at it and says whether you've hit enough of the points to go into the diagnosis, but the signs of it that aren't part of the diagnostic pathway, so things like that, emotional dysregulation, the rejection sensitivity, the sleep, the time blindness, sensory process, and the fact that 85% of people with ADHD have something else going on, whether that's mental health issues, autism, dyslexia, dyspraxia, and all of those. And so, people don't think about that when they're thinking about ADHD. They're just thinking about these people that are bouncing about and uncontrollable. They're not seeing all those other things that I think that are quite important for people with ADHD and I think that maybe they struggle with that aren't part of the criteria.

Kalliopi Mavromati:

Also, I have been thinking about this lot, and I was thinking it would be good to bring it up in this Dementia Researcher Podcast. I've been listening to friends and family and although I can't share their stories because they're not mine to tell, I'm seeing that some women in and around my life are realising that actually they have ADHD later in life, but much later in life at the point where other people may worry that they have dementia. I distinctly remember the months before I started meds, I was really struggling so much, I kept saying to everyone around me, "I feel like I have dementia. I find unfinished emails everywhere. I don't remember starting them. I don't remember why they're not finished. There are missing words in the stuff I write. I'm confused. I don't know why that's happening," even though I have systems, so I don't forget stuff technically. And I was thinking as a researcher that actually this is probably something that you can find in functional measures of daily life. I literally two days ago wrote up a project proposal where I'm going to try and use functional activities records from a retrospective cohort of older adults to try and see if I can make up an ADHD diagnosis based on that functional daily life data.

Dr Gemma Lace:

Okay. So, one thing that I'm really curious about, we're all dementia researchers in the room, was there anything specific around being a dementia researcher or being in academia that made your ADHD maybe a bit more apparent or triggered it or made you notice different sides of your ADHD? I see Kate is nodding enthusiastically. Should we go with you first, Kate?

Dr Kate Harris:

Yes. I have three words that maybe people in this call will identify with, which is rejection sensitivity dysphoria. And-

Dr Gemma Lace:

Please elaborate because there may be people listening who have no idea what that is.

Dr Kate Harris:

So, this is a term used to describe, I'm trying to think of a way of saying it, a phenomenon. Oh, my goodness, I sound so jargony. Essentially, one of the hallmarks of having ADHD can be that you are incredibly sensitive to perceived rejection, and perceived is a really important word here. So, two things I want to clarify there are sensitive does not mean it's uncomfortable. It means there is a visceral pain in the very centre of your being that makes you feel evolutionarily like you're being chased by a lion. Now, I haven't actually been chased by a lion, but I have been in fear for my life in the past and the feeling is the same.

Dr Kate Harris:

The second is the perception of rejection. So, for me, unless feedback or comments are genuinely positive, my brain will interpret that as rejection, which means anytime any feedback or any conversation does not lead with someone saying something outwardly positive about me as a human being or a researcher, my fight or flight kicks in. And as an academic, rejection, genuine rejection comes thick and fast and perceived rejection is pretty much constant. So, I'm not going to lie. Yes, okay, not having any structure during my job becoming an independent leader was bad, but realising that I couldn't navigate even being in meetings with differences of opinion or every time I asked something, someone saying no because bureaucracy said no was basically me in a constant state of panic attacks. And that was when I realised maybe I was a bit more than just bubbly and liked to run around a lot.

Dr Gemma Lace:

And I think that that is something that is crucial. If you are a PI or a supervisor or you are working with someone with ADHD, if you are not aware of that and the impact of your words that can literally send someone into a spiral of anxiety and catastrophizing, that is something really important that if you're listening to this, if you're watching this and you aren't aware of that, being mindful of how you articulate feedback and being mindful and being able to read the room knowing that not everyone will be able to be able read that room, it's so important, isn't it?

Dr Kate Harris:

I'm laughing, but it was actually probably pretty bad.

Dr Gemma Lace:

It is very uncomfortable. I've seen some interesting memes about this of people kind of laying in foetal positions after getting paper rejections. And it is that bad, isn't it? It is absolutely horrific.

Dr Kate Harris:

Well, if you just present a research idea and someone just goes, "Yeah, I don't really believe in your field of research," and you're like, right, I just need to jump off something. There's no point in me being here. I'm going to move. And you can't control it. It's not drama. I would love not to behave like this. And it's not like I kick off in the meeting. I go and I just sob on my own. But the fact of the matter is it takes time away from writing grants.

Dr Gemma Lace:

Yeah. What about some of the positive elements of ADHD then? How have you embraced some of your ADHD to make progress? Everyone in this room is successful. And if you're thinking, no, I'm not, that's your imposter syndrome. That is absolutely imposter syndrome. So, what do you feel have you been able to take advantage of with respect to your ADHD?

Dr Eric Hill:

I think I'm really carefully because I know some people say that ADHD is a superpower, and I don't believe that. It wouldn't be a disability or seen like that if it was. And I think if you could bottle that hyperfocus, yeah, amazing, but you can't. So, it's the worst superpower ever if you can't actually use it when you need it. So, for me though at certain times, that kind of interest in something, and for me it's always been science until I was a child. I think my nan used to know that. She took me to science museums. And that's carried on. So, for certain things in science that I would just be buried in and really be obsessive. And I think that energy that brings, that people are like, "Oh my god, Eric's really excited," and jumping up and down that you've got a result in the lab, that infectious enthusiasm for certain things.

Dr Eric Hill:

I think that's been great at maintaining focus in certain things, which is great in science because you're constantly chipping away and you're in interesting stuff. I think it's when you can't do that and you're having to do [inaudible 00:26:59] and other things in your job and the boring stuff. And especially I think as your career develops, your role gets bigger, you're doing other things, you've got a group, you've got all these deadlines, and that's when I had my diagnosis because I thought, "Why can't I mark 60 exams in a day like other people, but I did 20 other things?" And it was another academic that said, "Yeah, it's because you have ADHD I reckon." [inaudible 00:27:21]. Everyone used to joke about that when I was a child and they went... That kind thing. And I thought, oh. I went speak to my doctor and they went, "Have you ever done a test?" And they went, "Wow, you've got a high score."

Dr Eric Hill:

So, for me, there were certain things that worked really well with being a PhD student postdoc apart with some of the boring stuff. It was later on that it became a massive problem. And I think that academia is that constant environment of being peer-assessed, peer-reviewed, and just asking for rejection. And then how do you deal with that? You can either spiral or I just get, oh, I'm going to prove you wrong kind of thing. I get angry and almost, and then I'm going to be tenacious. I'm going to actually prove you wrong. And that emotional dysregulation can send people in a different direction. I think those around you might, "My God, they got angry about that or really upset really quickly. What was all that?" And the next second, you're like, "I don't really care about it. I'm going to have some food," and it's gone.

Dr Eric Hill:

So, I think people might not understand around you that that dysregulation, that lack of control is because you're not able to control it. It's part of the ADHD. And for us, maybe accepting that and understanding why we do that and not beating ourselves up is important. But the people around you might think, "Oh my god, I don't really understand that." One of my PhD students said I had an abrasive enthusiasm for science sometimes, in a good way I think, but I could see what... I do jump up and down. I do get excited about stuff. If I'm really excited about part of science, that's all I'll talk about for ages. So, I can understand that from other people. But for me, it's been great because my interest is science and it's my job, so it's like my hobby.

Dr Gemma Lace:

It's really great to hear that because I know that having special interests and that passion and enthusiasm, it's great if you've got somewhere to channel it and many people don't have somewhere to channel it and that can exacerbate the symptoms even more. Right? Natalie, what about you? How has ADHD influenced your career and how you've navigated maybe your student years and your choices?

Natalie Wickett:

Yeah. I think the two things that I would definitely say I struggled to navigate the most is the lack of structure and the fact that I would call myself a perfectionist, but really, it's more like if I can't get something right the first time, I don't want to do it at all. That's something I really struggle with, probably linking back to the rejection sensitivity. But if I can't do it perfectly the first time, I don't want to keep trying. I want to call it a day. But I think the lack of structure is probably the biggest one. Going into university, when I went and did my undergraduate, I went to Exeter, did neuroscience, and it was almost like the rug had been pulled out from under my feet. Whereas before I had this environment, I'd created to support myself and I had my family to look after me and help me and remind me. My mum would say, "Nat, have you done your homework? Nat, have you packed your lunch? Nat, have you," everything really, "got your PE kit?" And if I hadn't, she'd pick me up on it and she'd drop me my lunch to school or something like that.

Natalie Wickett:

But then all of a sudden when I went to university and I had all of that taken away and it required a lot more executive function to navigate daily life and daily tasks. And that was really difficult in a new environment like that. And yeah, I'd all of a sudden, I went from forgetting my lunchbox to locking myself out of my flat multiple times a week and forgetting my keys or missing doctor's appointments, missing lectures, not being able to get through lectures, things like that. And the lack of structure from university compared to school and having to regulate my own schedule, my own timing, that was something that was really difficult for me.

Dr Gemma Lace:

It's a real big shift, isn't it, from working that really structured environment to the research environment is completely lacking structure. I'm going to ask something that might expose myself here. Has anyone else as a compensatory mechanism for that discomfort with the lack of structure gone the other way and had to really over-structure everything to feel safe and secure? Maybe lists everywhere of things. Is that a me thing? Is that my ADHD? Does anyone else for certain things have to write lists? Kalli's nodding.

Kalliopi Mavromati:

Yeah. There's so much overlap between what you and Eric have been saying about and also Nat. Sorry. Oh my gosh, I had six tabs open and I'm trying to just stick to one thought. I was trying to answer what you said about the compensatory mechanisms. I use the office, going to the office, which I don't like doing because I hate the commute, I use it to force myself to do things that I don't want to do. So, I say... Yeah, wait, wait, wait. It works. It works. If I say, okay, I'm going to get myself, I got myself a nice coffee machine and so I will make myself a really nice coffee and I will enjoy my coffee on the way to the office. And then when I get to the office, I will just do the thing I don't want to do, and I'll just do it and it'll be out of my head. Also, what I've started doing to kind of give myself a little bit of structure, and I don't allow myself to think about those things I'm avoiding when I'm not at the office. That has solved a lot of issues for me. It works so well. It's compartmentalization. It's kind of like enclosed cognition, but instead it's just about where you are. It's conditioning yourself. You just have to stick to it. It's hard at first and then it starts working a lot. It works.

Kalliopi Mavromati:

But the other thing I do is I actually work nights. So, whenever I have to write, I can't do that when there's people around. And I'm finding it that if I'm home alone, unless I'm in hyperfocus mode, I can't get myself to do things when I'm alone. So, I go to the office later, like 1:00 or 2:00 PM. I do the things I don't want to do while there's people around. I'm the office jester; I bother them all the time. And then when they're gone, then I turn the lights off because I don't like the big light, and I just work away until 8:00 or 9:00 PM and that's me finished. And I don't carry stuff home, and I don't allow myself to do things outside of my designated structure that has absolutely no meaning because you could literally just say, okay, couldn't you just do the exact same things but in your home at your desk? No, I can't. I don't know what to tell you. It's about that change of environment. It's about telling myself it's actual do things that are annoying time. But that structure really has been working really well for me.

Dr Gemma Lace:

So, you've got some really good compensation mechanisms there about building your own structure, setting some clear boundaries, understanding when you work best and how you work best. And it also sounds like you've snuck in a little bit of reward there with linking to your favourite coffee. So, there's some really cool lessons to be learned there. Sorry, Eric, did you want to say something?

Dr Eric Hill:

Yeah. So, I really benefited from coaching later on after diagnosed meds really helped, but then coaching was really great and then I trained to become a coach later on. And when we were talking about things, my coach said, "Eric, you're weird for someone with ADHD because you've got so many organised things to make sure you look organised. That's really unusual." And I didn't really understand. And part of it might be fear of failure, that rejection sensitivity. I don't appear normal in academia. I have so many electric reminders. Even time to depart, you've got 15 minutes till that meeting, you've got 10, you've got five because I know I'll carry on talking to someone. And those things there, I've got two whiteboards with multiple notes on because I know I'll be blind to both of them at different points. And I'll have things popping from my computer. My watch will start to vibrate if I'm doing a lecture to say, Eric, stop, you're going to go over the time. And there's so many things I've put in place.

Dr Eric Hill:

And then a few people have also suggested, because I have so many rules I've created and then maybe they've become more apparent in medication that maybe I've got autism and ADHD. When I thought I didn't, lots of people just laughed and said, "Why do you think you don't?" All the light sensitivity, noise sensitivity, the things I do in the same order. My bag is in the same position. All my meds are in certain places in the kitchen that I know I will have to pass and go to. My bag is in front of the door so I cannot forget it before I leave. There are so many things to put in place to make sure that happens. And I think a lot of people would just do that, but I have to have them there. If I'm on the train, my bag is wrapped around my leg, so I don't leave it. So, there's just lots of things that you've done to appear normal, but all these reminders I have to have and that's kind of really helped to have those.

Dr Eric Hill:

But I think, like Kalli said, it's having those rewards built in. So, if I let myself, make myself do this bit that I hate, then I will get to have lunch or that snack or I'm going to go for a walk now or do something else and compartmentalise it. So maybe some people describe it as golden time. I'm going to do the really boring things in the morning when my meds are at the highest so by the afternoon I can do other stuff. And I always work best at night. And for ages, I tried not to because I thought that's really bad for me. But I don't work very well when other people are around. If I haven't got my playlist or whatever it is, or my noise-cancelling headphones on where I am, I can't do that extended writing. So having those rewards built in. But just sometimes when you're in that moment, I have to just let it go and I'll just spend hours writing or doing something else because if I try to force myself to do it at a different time, it's just never going to happen.

Kalliopi Mavromati:

That was such a hard lesson for me to learn. I went my entire education and career before meds by just having multiple jobs, multiple things. I did group exams and exams to get here, and I was using one to productively procrastinate the other because that works. I didn't have much free time, but I was avoiding one by doing the other, so I was actually so productive. And I did that throughout uni, but then at some point everybody was like, "You need to go slow and steady with your dissertation." And everybody kept trying to force me to work in a way that I am not capable of working and I never will be able to do slow, steady, and slow and steady. No, never, can't do that.

Dr Gemma Lace:

There's such a strong message in that for people who aren't living with an ADHD, is that having a bit of empathy of the different ways of working and an acknowledgement that... It was a big deal when I was in the lab of who was in at what time and how many hours people were doing. And that research culture of acceptance of different ways of working, different patterns. Many of you have mentioned using different states of your energy to do different tasks. Is that getting the worst thing done first? Is it called eating the frog in the coaching world? It's like get that worst thing done and out of the way and then reward yourself afterwards. So, there's loads of really useful insights for people who may be looking at this. So, Natalie, have you got anything that you want to add to that?

Natalie Wickett:

Yeah, I feel like I've tried a million different things to help with ADHD symptoms. I've done all the planners, I'm sure we all have. It's nothing new. But I have a few kind of what I call little hacks for myself to set myself up for a good day and set myself up to be productive because otherwise I will just hyperfocus on scrolling on my phone. So mainly diet and exercise, I find it really important for me. If I move, I feel a hundred times better. So, I tend to wake up and go to the gym straight away. And have a high protein breakfast to help kickstart my day, get that dopamine production going. I think the high protein breakfast is really important. I have blue light glasses even though I don't have prescription glasses. Blue light glasses make me feel like I'm smarter and make me feel more productive. So, for whatever reason, I put my glasses on, I'm in my zone. It's kind of like when you don't want to go for a run, if you put your shoes on and do them up, you're ready to go for the run. Same kind of concept for me.

Natalie Wickett:

And another rule I have is don't put it down, put it away. If I put something down, I never pick it back up. I know I won't. So put it away, don't put it down. Alarms, I have a million different alarms on my phone because I know that I'm going to forget my appointment. So, I set an alarm an hour before, get ready for my appointment, get ready for my meeting, get ready for my lecture. I know that's done. And body doubling as well. Super important for me. Half the stuff I get done, I can't get done on my own. If I need to tidy my room or if I need to do some work, I'm going to call my friend and I'm going to do it whilst I'm on the phone or if they can come sit, it's even better. And lastly, if I have a day where I don't take my medication or something, obviously do your own research before taking anything, but L-tyrosine is, I find, an incredible supplement. I think it's supposed to boost your dopamine. I can't quite remember how it works off the top of my head, but definitely something to look into. If anyone out there doesn't work with medication or thinks they might have ADHD and they don't want to take medication or they can't yet because they've not got a diagnosis, look into L-tyrosine and see if it helps.

Dr Gemma Lace:

Fabulous. Thanks, Natalie. We will come back to medications in a moment as well, but first I just wanted to make sure that, Kate, what do you think about coping mechanisms? What works for you?

Dr Kate Harris:

Cheers. I was just going to say that yes because L-tyrosine is the precursor to dopamine chemically, which is why the high protein breakfast works so well as well. Had to get chem head in there somewhere. What was I going to say? So, I'm very new to all of this, so I'm learning a lot from all of you. Thank you. Because like I said, this came out of nowhere in the past couple of years and I don't really know what's going on. But what I do know is that normal time management methods do not work. So, we hear a lot of eat that frog and blah, blah, blah, blah, blah. And I can't. The frog is irrelevant to me because I'm interested in the zebra in the corner. So, I have to build up in a slightly different way. I was also going to say... Sorry. I know, but you know what I mean?

Dr Gemma Lace:

Love it.

Dr Kate Harris:

It's in front of me. I want to just tell Eric, yes, I'm trained as a coach too, and it's amazing. Anyway, and that's been really helpful for me actually as a coping mechanism. Didn't realise it at the time, but I think it was deliberate because I wanted to understand how other people behaved and the ways other people behaved. I think that has become something of a special interest. But it really helped me understand the responses of others. And so, if someone's very direct, but that's because they're a very direct personality, it makes me less likely to spiral, et cetera. But in terms of getting stuff done, I have to build up, almost like build up dopamine. I need quick wins in the morning to get started. If I just go for the hardest things first, I'll just end up rocking in a corner. But I just go, right, what is the smallest, easiest thing that frankly is going to take me nothing and I have to just build up the momentum and then I can tackle that big thing, which is the exact opposite of what all the common task management tells you to do.

Dr Kate Harris:

It's something I really want to bring into our institution. We're all facing efficiency drives across the sector. And any efficiency drive has got to take the neurodivergent mind into account. So, there will need to be separate advice on task management for people who cannot just... People go, "Oh, just block out your day." Great. My Outlook says I'm not doing anything, but I can assure you that that is not what is happening. So, I think that's the bit I'm learning. And then I just want to thank the rest of you for all of your advice because I've taken much of it on.

Dr Gemma Lace:

That's brilliant, Kate. Again, it's coming back to that thing of appreciate we've got people in the room that they've got that same diagnosis, but there's still variations in how we need to do things in our way for us in relation to our fluctuations and our experiences. And I was also laughing because I'm a coach as well. It's like... And I've met so many people in that coaching space of people like, oh yeah, maybe... And I think it's about that, that some of those other parts, elements of ADHD-

Dr Kate Harris:

That's how I actually started looking into it was because I was on a training accelerator. I trained with a coaching academy, and they do these big accelerators.

Dr Gemma Lace:

Me too.

Dr Kate Harris:

Oh, hello. And literally, I got onto one of the calls in one of those breakout rooms that they do, and someone went, "Well, you're neurospicy." And I went, "No, I'm not." I was literally, honest to God. And then a few months later when everything started falling apart, I was like, "Maybe she was right." I've been trying to find her. I can't remember her name obviously, but I want to find her be like, "Cheers, fam." She was like, "No, there's something about you. You're spicy." It's coaches, man.

Dr Gemma Lace:

ADHD-ers need to help others and support others.

Dr Kate Harris:

That is true. [inaudible 00:44:48].

Dr Gemma Lace:

Okay. So, we've spoke about a lot of the coping mechanisms, which is really around how we manage ourselves and use tricks and tools to manage ourselves. But what about medications then? Are they any good? Do they really help? Eric, do you want to kick us off?

Dr Eric Hill:

Yep. I think linked to people's coping mechanisms, if you've met one person with ADHD, you've met one person with ADHD. It's a great phrase that I've learned from one of my friends with ADHD. And I think the same with medication. People have to find what works with them, and it can also be what brand. So, I've been quite lucky. I've found medication straight away that worked and went through different stages of titration. So, I'm on one of the stimulant medications. I must say that there's different types. There's a stimulant medications, things like methylphenidate, which is kind of like weak speed, some people might describe it as. And then there's non-stimulant medications, and that carries with it a stigma because you go to get collected, it's a controlled drug, you have to sign extra things. It's in a bag with an orange sticker on it in the UK to say controlled drugs. They have to go and count it out as well at the same time. You have to constantly go in and drop the prescription off and be checked.

Dr Eric Hill:

So's there's those kinds of things that come along with medication. But people have to find different things. My sister has a diagnosis; she's tried multiple medications to try and find the right one. And sometimes they just don't work for people. I think you have to be careful. They don't do everything to fix your ADHD. They can help control some of the symptoms to help you to focus. But I think you also need to develop other skills. And I think for me, coaching was the big thing that went alongside the medication to understand my brain better and how I do things, but also to challenge people around me to have those difficult conversations, to have some tools to use and to understand.

Dr Eric Hill:

One of my biggest issues is if people aren't clear in directions. So that will lead me to procrastination. I'll waste loads of time doing too many things. So having this clean setup where I'm going to work in a particular way because it works for me and explain that to other people. But I think everyone needs to understand the differences between the medications, that they may try them, they may work some of the time, not all of the time, that your diet might be important, the exercise, how much sleep you're getting, and if you're real on whether they're going to work. And so, I think some people get really disappointed quite quickly with them because they're not doing things straight away. And it took maybe for me, three months before I noticed that suddenly I was doing loads of stuff that usually I'd struggle with. And all of a sudden, I was like, wow, I've just done loads of marketing in one go. And I thought, oh, is this what other people are like?

Dr Eric Hill:

All that noise wasn't coming in. I would like to say they're not voices, but like not quite being tuned into the radio properly, there was too many other things. And all of a sudden, I was productive and I could get that done. I was like, oh, wow, that was weird. And then in the afternoon, I'm bouncing around all over the place. And maybe for some people they have top-ups. So, there are medications that are instant, other one’s kind of slow release. So, you get that early rise and then slow decline. And some people they break that down quickly and need top-ups in the afternoon, and then there might be a bit of a spike in their focus. And then that also relates to maybe their behaviour and their emotional state. And so, I think for having people around you with that understand, oh, it's the afternoon. Eric's medications going to be running out. These meetings are going to go on a bit longer. Let's do this at nine o'clock and put something right after it so we have to finish on time. But at least he's going to focus for most of that. And so, it's important to understand how they change over the day.

Dr Eric Hill:

But I think to me, there were lots of advantages. Medication changed my life, no doubt about it. I think it probably would've stopped me having some kind of nervous breakdown. But I think after that, after dealing with that initial change, it was what else do I need to change? And it was the way I was working to suit other people, not to suit the way my brain worked. And almost that period of mourning and then understanding I'll fight my brain. And other people need to understand that I will just go along, I am a people pleaser, and actually it'd be better for me to work in a different way. And so that's been really useful to have the tools to do that alongside the medication.

Dr Gemma Lace:

And that people pleasing is exhausting, isn't it, when you're trying to do it everyone else's way? And I think that's what, once there's an acceptance of your ADHD of, I can just do it my way, and I can articulate to others what would be useful for me. And I think given that we're really nearly out of time, I'm really keen that we have a strong round-up message for the audience. So, if someone was listening to this and they thought that they had ADHD, or maybe it's someone who is working closely with someone who does have ADHD, or maybe you're a supervisor and you've got a student with ADHD, team, what do we want them to take away from this discussion? So, Natalie, could I come to you first? What do we want people to take away from this chat?

Natalie Wickett:

From the perspective of a student with ADHD, I think it's very important, as Eric was saying, to have clear instructions because if they're not clear, obviously procrastinate. But more than that, I think it just makes your life so much easier to follow step by step and have everything clear. And secondly, lots of small deadlines. If I have one big deadline, I'm not going to do anything until it's urgent. And the urgency is a big driving factor for people with ADHD. If I have lots of small deadlines, the urgency is going to come at different points, and it'll force me to make sure I get things done when they need to be done and keep me on track. And that's probably the biggest factor that helps me.

Dr Gemma Lace:

Yeah, really good tips there. Kalli, what about you?

Kalliopi Mavromati:

I mean, it's like Eric said, no two people with ADHD will be the same. I wish my supervisors, if I could have told them one thing, I would've said, "Please don't give me deadlines and be patient with me. Help me understand what I need to do and I will find a way to work, make it part of my system instead of making myself fit a plan you think will work, but probably won't because I don't work in the same way as you." And I do say the same thing to my colleagues. Also, I ask them to wash my mugs because I cannot wash my mugs at the office. They're very nice about it. I bring coffee and then just they wash my mug as a thank you. So, I really appreciate them. So that's my message.

Dr Gemma Lace:

Thanks, Kalli. Kate, what about you?

Dr Kate Harris:

I don't know how I can follow that. Do you know what? I'm sorry to be soppy. Normally I like to be the Bantersaurus Rex, but what I'm going to say is that the one thing I want someone to take away, whether they think they have ADHD or they have a colleague with ADHD, is compassion for yourself, for your colleague. With that is curiosity. We're taught in coaching that no behaviour is a problem behaviour. And I said that oddly like the parent of a toddler, apologies. But what I mean is a lot, it's about curiosity and understanding. You can look at someone and go, oh, they're different, they're annoying, or you could get curious about it. And that includes with yourself. So rather than going, oh, why can't I shut up in this meeting? I went in determined not to say a word, and then I couldn't get curious. Or if you're wondering why a colleague sometimes, I think one person once describe me as schizophrenic because one second, I was... It's not okay to say, I know. One second, I was all confident the next second I was hiding. And actually, rather than saying as a judgement , maybe go for why, why might that be kind of thing. So just ask a person the question, ask yourself the question, and be compassionate about whatever the response is.

Dr Gemma Lace:

Beautifully put, Kate. Beautifully put.

Dr Kate Harris:

Cheers.

Dr Gemma Lace:

Eric.

Dr Eric Hill:

I think, yeah, I think just being educated to understand what ADHD is and what it isn’t and understanding that person that you work with. They might have these highs and lows. They might be working really hard all the time. And just to help look out for them to be very clear about boundaries and enable them to have structures so that they can work within a particular way that's helpful to them and trying to understand that. But also, to understand that in order to please, they may burn themselves out unless the instructions are clear. And because the medications are often stimulants, we don't necessarily get tired while we're burning ourselves out. And so I think it's important to realise that to sometimes give people clear boundaries and tell them exactly what you want from them, and understand that it may take more time for them to do that, or they may need to work in a particular way, but to just really understand for their ADHD, what they're like and what works best for them and what doesn't.

Dr Gemma Lace:

So hopefully those tuning in will now have much better understanding of what ADHD is and how it affects people differently. We have spoke about so much in this session. It has been really interesting and really exciting. We've gone from various tips and hacks and things that have worked well for people living with ADHD to some advice for those working with ADHD. But I think what we've done importantly is maybe quash some of those misconceptions around what ADHD might be. And maybe we've encouraged some empathy in the fact that it looks very different in different individuals. And even in the same individual, it can look different at different times of the day or depending on the cycle of the month or what has been eaten for breakfast and so on.

Dr Gemma Lace:

So, this has been a brilliant discussion, and I can't wait to meet you all in person. That is going to be fun. Thank you so much, Dr. Eric Hill, Kalli Mavromati, Natalie Wicket, and Kate Harris, for sharing really authentic, genuine, honest, brave stories today and great advice. The links to relevant resources will be included in the show notes along with the full transcript, which will be available at dementiaresearcher.nihr.ac.uk. Don't forget, we do have the Dementia Researcher community app where you can share your own experiences and talk about this topic more. Thank you so much for listening. I'm Dr. Gemma Lace and you've been listening to the Dementia Researcher Podcast. Goodbye. Say goodbye, everyone.

Kalliopi Mavromati:

Bye.

Dr Kate Harris:

Bye.

Natalie Wickett:

Bye.

Dr Eric Hill:

Bye.

Voice Over:

The Dementia Researcher Podcast was brought to you by University College London with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, leave us a review, and register on our website for full access to all our great resources. Dementiaresearcher.nihr.ac.uk.