Invisible Me Podcast
Join Pat Porter on Invisible Me, a show that discusses invisible health issues and the feeling of being unseen and unheard. Through informal fireside chats, Pat and her guests share their personal stories of living with hidden conditions and disability. They discuss the emotional and physical impact of chronic illness, the challenges of navigating daily life, and the importance of support and acceptance. Invisible Me is a safe space for honest conversations, providing insight and community for those affected by invisible health issues.
Invisible Me Podcast
Rebecca Killick: Navigating neurodiversity and ADHD
In this episode of Invisible Me, host Pat Porter speaks with Rebecca Killick, Professor of Statistics at Lancaster University, about their experiences with neurodivergence and ADHD.
Rebecca and Pat share their personal stories of being diagnosed as neurodivergent as adults, and the challenges and misconceptions they've faced in their personal and professional lives. They discuss navigating a world that doesn't always understand neurodiversity, the emotional impact of judgment and misunderstanding, and the necessity and burden of educating others about their differences.
Rebecca shares some of the tools and techniques they use to manage their neurodiversity, like carrying small objects to fidget with and taking walking meetings.
Intro music by Ben Blanchard.
Edited by Tom Haigh.
Welcome to Invisible Me - a podcast centered around invisible health issues and the feeling of not being seen and heard. Yet here I am standing right in front of you. Does this sound familiar? Welcome. Join the conversation, share your experiences. Let's break down those norms and attitudes for the better. This is a safe space to chat with me, Pat. Today, I'm delighted to welcome Rebecca Killick, the professor of maths and statistics all the way from sunny Lancaster University. So welcome, Rebecca, good to have you here.
REBECCA KILLICK:Thank you very much for the invitation.
PAT PORTER:I'm delighted. The podcast is all about the word invisible. And that can mean so many things in so many areas, and for so many reasons. I'm just prompting it a little bit to dive into conversations around health, wellbeing, physicality, mental wellbeing. I mean, I can't explain how many ways can come under the the world of discussion around the word invisible. But for me, it falls into my health and well being. I'm 16 years living with a condition called fibromyalgia, which is a painful condition, a chronic illness in the muscles of the body. But I'm upright and walking and functioning. So hence the invisible illness. Arthritis, most people will be familiar with painful arthritis. And also, I'm quite happy to add on the new label of being neurodiverse. I just kept saying before this, oh, I'm just dyslexic [laughs]. Now I know why my brain works the way it does. And that's kind of for me, and it's just presenting in different situations in life, in the workplace, at home, in my village, out shopping walking the dog. And people make assumptions. I don't care if people say judging a book by its cover, but we do. We are human beings, we make assumptions. And sometimes we could be right and sometimes terribly wrong. But that's down to the individual that's talking to the other person. But regardless, I just seem to adapt as in I just did it, nobody told me what to do, how to cope and live with me situations. So I kind of roll with it. But I do get frustrated sometimes when I'm struggling and somebody makes the assumption that I'm fine and I'm well. So that's where I'm at. Just curious, Rebecca, can you relate to any of this at all in your life?
REBECCA KILLICK:Oh Completely. Absolutely completely. So, I mean, from my personal perspective, so I'm similar, neurodiverse ADHD, and that's autistic and ADHD, for those who aren't aware. And I, so that's kind of always been kind of rumbling in the background. And that's the hard one, because that can't really separate about stuff. Separate, you know, from when you kind of, you know, what's related to that, and what's related to just general life that that people have.
PAT PORTER:Yes.
REBECCA KILLICK:Because I've always been that way. But, you know, through-
PAT PORTER:Were you very aware, Rebecca, from childhood, were you very aware early, were you diagnosed early? Were you aware?
REBECCA KILLICK:No, no, no, I was not diagnosed early, I was I was adult diagnosed. But it's one of those things where you kind of, you always kind of feel different. And you always kind of think, oh, my brain doesn't see things the way that people do. But then you kind of, the question is, you know, how much do you kind of just go, oh, that's because everybody's different.
PAT PORTER:Yep.
REBECCA KILLICK:And it takes you a long, potentially takes you a long time. It really depends on the individual to kind of say, or have enough people say, no, no, that's not really like, normal, whatever they mean by that. So that's kind of quite difficult in that sense. But in, even with a diagnosis, I've always been me. And so I didn't, the diagnosis was really helpful in terms of affirming that actually, a lot of the struggles that I was going through was not just that I wasn't trying hard enough, or that I wasn't, I don't know, wasn't able to cope with life in that sense, the way that other people seem to be able to do it seamlessly. So from that perspective, there was an understanding about myself, which was good, but it fundamentally didn't change who I was or how I behaved in that sense. Obviously, the understanding helps in a lot of ways of being kind to yourself.
PAT PORTER:And something that we are a bit poor at doing, we don't stop enough and, self care is key.
REBECCA KILLICK:Yes.
PAT PORTER:And I've said to people in different situations I've just given, but I'm just Pat. I'm the same Pat I've always been. When they learn something new about me, I'm going, but I'm just me. Like, I can. Yeah, I get it. Yes. We're just us all the way through, nothing changes!
REBECCA KILLICK:Exactly. It is really hard as well, you know, it's a relatively new thing. There's, you know, disclosing my neurodiversity is one of those things where there are people that know and there are people that don't, yeah, and it's, I'm not hiding it from anybody, but it's one of those of, there are not always positive reactions from people. And sometimes, you know, they do treat you differently afterwards. And you just like, well, in some ways, that's good, because some people treat you differently in a in an understanding way. And some people treat you differently in a, you know, I thought I knew you now I don't, so I'm going to be, at least it feels to me like, like, they're a bit off with me and that they don't feel they can talk to me in the way that they used to. Which, as you kind of say, you say I'm just Pat, I say, I'm just Rebecca. It's, it hasn't changed fundamentally our interactions previously. This new information, yeah, how does it change. But I appreciate for some people it does. So everybody's different. Everybody handles information in different ways. And some people feel like they have to do something when they, with that new information when they find out. And so they can maybe feel like it's a bit of a, a bit of an obligation on them. But everybody's different. Everybody needs different things. And I think as long as we feel empowered to be able to talk about it openly, I think that's, without judgment on either side, I think that that's the goal, we really need to be getting to for that.
PAT PORTER:That's key. I'm reaaly glad you said that. I wholeheartedly agree. It's more about educating others. And especially in an environment like in a workplace, because you're the same person the day before that you share the news with this day. And I do think it's more of patience, a little bit of ignorance, and people, they don't change. So they're maybe not willing to try and understand, which is a bit sad. And that happens. And that's just them with just kind of closed ideals, or they don't know what to do with people that are different. But we're just us, we're people living our lives and doing our lives the best we can. But it is a bit sad, people do judge and can't cope with change, in a way that they go, oh, I don't want to offend them. So their behavior changes. Yes, the tailor how they talk, they tailor their mannerisms, their behavior, and it's so blatant to us. And somehow, we still have got to dust ourselves down and carry on. And then others are want to learn about it and embrace it and will ask you questions and want to understand you more and be better friends and better relationships. So it's a balancing act, but we're just us.
REBECCA KILLICK:It really is. And there's the other side as well, especially in the workplace around the burden of educating as well, which I I sometimes struggle with, that people think that because I am neurodiverse it is my job to educate everybody else in what that means. And you know that there is often an overhead in processing and understanding and being able to function in the world that already comes with being neurodiverse. And so adding on to that the expectation that you will explain things to others, and the expectation that you will manage others feelings about how you react to situations or about how you respond to things is, is always challenging as well. I've got some wonderful colleagues that are really supportive. And then there are other people who are less supportive. So there's always a mixture, just like everybody's different. Everybody's reactions are different. And yeah, it's about trying to have all of us be more considerate and compassionate about other people I think. That's where we need to be heading to.
PAT PORTER:Exactly and as you said, the responsibility feels like it's on us to say and explain it all the time. And that's exhausting. You know, you're coming out about this new thing about yourself and telling people and then you kind of get to a point like, I just can't keep up doing this. I'll make a poster and put it beside my desk and and that's it and go away![laughs] And, you know, that's the thoughts that go through my head as well as others, which are swear words. Anyway! Secondly, family, it's not a given that family get it either.
REBECCA KILLICK:No.
PAT PORTER:Cousins, relatives, grandparents, aunts, uncles. But they probably always thought, oh, they're the odd one in the family, the black sheep anyway, we've always known something was wrong. And I hate that because it's making it a negative thing, a bad thing. It isn't. It's not a negative thing. It's who we are.
REBECCA KILLICK:Yeah, I think...
PAT PORTER:Put down insults are always...
REBECCA KILLICK:Yeah. I absolutely love my mother. But when when I first told her that I was getting referred for, for an assessment, her response was,"Well, that's a waste of time, because it's clearly you're, you're not." And I love my mother, she's amazing. And when my diagnosis came through, for her, it was, I think it was a real shock. And that, obviously, a lot of feelings come through around that. And, and I'm, I mean, I don't want to speak for my mother, but we haven't really had that kind of, we haven't finished that journey yet. On what that means, in terms of my family and my upbringing, things.
PAT PORTER:Sure.
REBECCA KILLICK:And not everybody in my family knows either. So there is that side too, disclosure isn't just to friends, family, and work, it is the wider side. And, and it also carries forward to my own children, in that sense of we talk often about how everybody's brains are different, and you don't always, you can't always see how other people's brains are working differently, because you can't see inside their brains.
PAT PORTER:Hence the invisible power.
REBECCA KILLICK:And I think that's a wonderful thing about it. You know, we cannot see the inner workings of our brain. I would love it if we had like, see through skulls where you could, you know, things would light up in different colors on the different ways that they were processing or something. I would love that because...
PAT PORTER:Oh I can see you launching a new academic study here! But it'd be, yeah it would be, it would be amazing.
REBECCA KILLICK:Yeah.
PAT PORTER:Just think of all the opportunities to change, maybe the statistics in crime and all sorts. But if we could alter and tweak people's brains, that would be magical.
REBECCA KILLICK:Well, it's not about tweaking! It's about understanding, it's more like, you know, if I can visually see that, you know, somebody's brain is struggling, and it would light up red when it's struggling, something like that.
PAT PORTER:Ah, okay. I'm with you now. G ood visual, yes.
REBECCA KILLICK:Yeah good visual. So if there was a part of the brain that was struggling to make connections, or things like that, and it was lighting up red, that would be amazing. Whereas instead, what we visually see is maybe somebody stuttering, or we might see somebody shutting down and not responding to people. Or we might see them flapping more, you know, using stims, things like that. Yes. And our brains don't really know how to process what we're seeing as somebody struggling, sometimes we see it as bad behavior, or somebody being rude. And, but if we could see, like, if their brain would just like light up red, and we could visually see that, that would be like, a game changer I think, for the whole...
PAT PORTER:It would.
REBECCA KILLICK:...because it would no longer be invisible, it would be a visible thing.
PAT PORTER:The person listening and conversing with the other person could then change their language. And then the red might go into a nice little orange or a glowing yellow, because more information, the correct information added to what the brain was seeing at the time alerting read, would change. Because then as you said, the interpretation is simpler.
REBECCA KILLICK:Exactly. Exactly.
PAT PORTER:Oh, I think we've just discovered, we've discovered a new thing to do![laughs]. 2025, Rebecca and Pat are on a mission, we're gonna go driving around the nation in our big bus that ship like a brain![laughs] And we're interviewing everybody that stops in the street, and we will have, we'll have a hat on that has lights coming out at different colours, it'll be like a disco hat. But...
REBECCA KILLICK:I mean, we're not that far away, I don't think Pat, in all seriousness, I don't think we are. We have caps that can do EEG on the fly now and things that some amazing companies are producing. So yeah, I'm hopeful that that will be something that is there in the future.
PAT PORTER:I think so.
REBECCA KILLICK:That would be amazing.
PAT PORTER:Really do. We are, we're improving, we're developing, we're... we've come a long way. Look at the mobile phone. We'll not even start a conversation on that! But yeah, I'm really heartened to what you said about your dad, and your mum, you know, taking it all in and digesting it, and dealing with it. With dyslexia, myself, discovered it in my final year in university, then it all made sense while I was struggling, but yet still achieving, I have to say!
REBECCA KILLICK:There was, there's still many situations. So I had an event that I was at, I'm not going to name names for the event. But I was at an event and I was chatting with everybody. And, you know, the opening and the initial coffee break, you know, I was having conversations with people. And then we had to introduce ourselves in a public forum.
PAT PORTER:Sure.
REBECCA KILLICK:And the way that my body reacted was in absolute terror. This was a room, a sea of people that I've never met before. That's not uncommon for me in my job. But these were people that were from other disciplines. And that's, that is very unusual for me to, to meet a lot of people that I don't know, from many, many other disciplines. And my body reacted in a way that it had never reacted before. And it basically outed me. And so I felt I had to explain why that was the case. And so I basically outed myself as neurodiverse. And it was really saddening that the following coffee break and lunch, people avoided me. Oh, no. And it was, it was really, really hard. Because I'd seen like the morning that the welcome and then the morning coffee break. And so that, for me was like my first time when I had disclosed to people that I didn't know, because most of the time I'm disclosing to people I do know.
PAT PORTER:Sure.
REBECCA KILLICK:So the first time I disclosed to people I didn't know and there was such a, an obvious negative reaction. Now over over the course of the next couple of days, there were people who did come and say hi to me, and they were wonderful people, and they kind of got to know me, as me or not the, the reaction that my body had portrayed to people, which I understand is, is... So for those who are listening, I was shaking quite heavily, and couldn't really get my words out very well and things, and took a long time, my brain was processing extremely slowly. But it was, that for me was the first time when I was thinking, oh, maybe I do need to think more carefully about who I disclose to.
PAT PORTER:Well I'm sad that you had to go through that. Yeah. And I'm actually quite shocked. I really am. As you are. I'm really shocked. I just thought the world had somehow moved along a little bit. Even just manners, and etiquette, people would just be, you know, speak and make small talk and then move along if they were uncomfortable. But, really?
REBECCA KILLICK:Exactly. It was. I mean, it was one of those things where the stark reality for me was, it was just such a contrast.
PAT PORTER:Yeah.
REBECCA KILLICK:And as I said, over over the course of the next few days, where as we were doing lots of small group stuff and things, I think people started to realize, oh, actually...
PAT PORTER:She's okay!
REBECCA KILLICK:She is a normal person, you can just go and talk to. But so it did get better. But it was just those first couple of the coffee break and then the lunch afterwards that was like, whoa, okay.
PAT PORTER:Well I'm very impressed. You endured it and got through it, and continued to meet the next day and kept going. So that's commendable.
REBECCA KILLICK:Well, as as you just said, we, we're so used to just getting on with it.
PAT PORTER:Yeah we are.
REBECCA KILLICK:That was exactly what I said, you know, you just pick up and you move on. And it's really hard. It takes so much energy. But part of it is that people maybe also don't see. So the kind of invisible side of it is, people wouldn't have seen how much that hurt me and how much energy it did take to then not just hide away in the next sessions, to actually show up the following day. All of that energy has to come from somewhere.
PAT PORTER:Somewhere. Yeah.
REBECCA KILLICK:And that is the hard thing that people don't see. And maybe potentially don't realize is happening in the background. And a lot of the time with neurodiversity we have pretty, one of the kind of traits is you have stronger emotional reactions, or some people - I shouldn't speak for for everybody, but I certainly feel I have much stronger reactions both positively, so I get much more joy out of positive things. But I also get much more negativity about the things that are negative in my life. So it's like the, the range of emotions is much wider. I don't tend to have a lot in the middle, I tend to have stronger one way or the other. And so that that is really hard. And we were touching on mental health earlier, it kind of falls into that side as well. So people don't see the struggles that you go through as a neurodiverse person around that. They see the fact that you, you know, you might put a smile on your face when there's a comment that somebody makes that hurts you. And you you try really hard.
PAT PORTER:Oh well thank you for sharing that, for folks listening, who are actually living, same emotions that we are going through. It is very different for everybody. But to slightly find a common thread, and that is the effort, the energy, of keeping going, presenting and showing up and managing our daily lives. And that's our home lives and our work life and social life. If we have a social life, because that's another... that's another podcast. But it is exhausting. And it does physically have evidence on our, you can have some visibility evidence. I think we're super resilient. I think we're an incredible bunch of people. But the visual of the brain and the colors is very useful. And sharing your emotions and how you handle it. Thank you for that. Can I just ask you, is there anything else you use that is visible to help you cope? I use a fidget spinner or I play with a bit of Blu-tac. I'm a fidgeter full stop! I've always been a fidgeter before I even knew who I was as a person and all my warts and all. Is there anything Rebecca that you, little tools or tips, you might be able to share that others could maybe say I'm doing that or, oh, I hadn't thought of that. Only if you're comfortable to share!
REBECCA KILLICK:Definitely, though, there are tons of things that I do. So one is that I always have something in my pocket that I can play with. So it doesn't necessarily come out as something in my hands but I will often have my hand in my pocket and I'll be playing with either a coin or key ring or something like that in my in my pocket. I quite often like having two coins or a coin and a button. They're my favorite ones at the moment because the button has different textures on it as well and then you can turn them around each other and things. So they're the kind of coping mechanisms I had. I always played with pens, the amount of pens with broken lids and stuff around is just, yeah, insane. I was the kid that used to get told off for clicking pens in the class all the time. Right now I'm actually playing with the back of my phone case. So...
PAT PORTER:There you go.
REBECCA KILLICK:My phone case I have a little stand that kind of flicks up so I can put my finger in it and I play with that all the time. And it rotates as well as going up and down.
PAT PORTER:Yeah movement's key. I feel movement as well as texture is key.
REBECCA KILLICK:Yes.
PAT PORTER:For me again, as you said it is texture. Some people you will see they'll play with their hair.
REBECCA KILLICK:Yeah, I do that.
PAT PORTER:That's what they're actually doing they're soothing themselves playing with their hair. My hair is too short.[laughs]
REBECCA KILLICK:Mine is not I do play with my hair.
PAT PORTER:So yeah. Blu-tac, paperclips, whatever's sitting nearby.
REBECCA KILLICK:Yes.
PAT PORTER:A book, sometimes a book, a page feels really nice. Whatever I'm wearing, my clothes are always cosy either with hoodies with fleeces inside, I have to have that softness. So it is, it's very much about texture, how it feels. But then it's kind of a mindful action because it's repetitive. I'm moving something, I'm doing something and my brain is focusing on that subconsciously, while I'm still having a conversation and doing my job. And it just grounds me.
REBECCA KILLICK:Yes.
PAT PORTER:It doesn't fix me. It just helps me ground so I can continue with the rest of the day. I know occasionally there is odd moments that are even more so and then I have to walk away. I will have to go out sit in the garden. Be around trees. For me it's nature. And there are days when you're just as you said recovering from an enormous, overstimulated environment or situation. Almost like being in that conference. You just want to go and walk by a river or get outside.
REBECCA KILLICK:Yes.
PAT PORTER:But that, we automatically self help. But having little tools also around you. Just do it. Who cares if the world is watching. Do it if it makes you...
REBECCA KILLICK:Exactly. And for myself, definitely walking meetings. This was something that my PhD advisor introduced me to. So we're very lucky at Lancaster University, we have a woodland trail.
PAT PORTER:Wonderful.
REBECCA KILLICK:And my office is probably a couple of hundred meters from an area where you can access the woodland trail. So that for me is one. And I absolutely loved it. A few weeks ago, one of my PhD students came into the meeting and took one look at me and said, "Shall we go for a walk?"
PAT PORTER:Wonderful.
REBECCA KILLICK:And I just loved it because he came in, he recognized that I was... I don't know how but immediately recognized that there was something that I was struggling with.
PAT PORTER:There was a need.
REBECCA KILLICK:And I, by that point, I hadn't even referenced it myself, you know, because I do struggle to recognize these things still, before I get overloaded, so it was just wonderful. Because he said,"Yep, we can go, we can walk, we can talk while we walk. If you know if you need silence, that's fine."
PAT PORTER:Very intuitive person. Wonderful.
REBECCA KILLICK:But to have people around you like that, that can recognize and understand and be able to help by just offering suggestions. Even when you haven't realized it yourself. It's it's really nice.
PAT PORTER:Yeah. That's invaluable. I'm glad that person's around in your life. That's wonderful. I'm going to wrap it up, because I think we've given lots of little nuggets.
REBECCA KILLICK:We have, yeah.
PAT PORTER:But I'm gonna ask if it's okay we have a chat another time and follow up on a few other little subjects because I think Rebecca in the house has a lot to share.
REBECCA KILLICK:That would be wonderful. Yeah, we've only spoken about neurodiversity today. So yeah, always happy to talk about other things.
PAT PORTER:That would be great, me too. And I think I will come over on site and go for a walk in that woodlands because I'm not too far from Lancaster. So that would be amazing. It's been a pleasure and delight talking to you.
REBECCA KILLICK:Yes. Thank you very much for the invitation again.
PAT PORTER:Thank you for sharing and much much appreciate it. Bye for now is what I'm going to say.
REBECCA KILLICK:Bye.