ADHD, Chronic Illness and Long Covid: Understanding the Intersection and the Road to Recovery

Welcome to the ADHD Women's Wellbeing Podcast. I'm Kate Moore-Yusef and I'm a well-being at Lifestyle Coach, the FT practitioner, mum-to-four kids and passionate about helping more women to understand and accept their amazing ADHD brains. After speaking to many women just like me and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with ADHD. In these conversations you'll learn from insightful guests, hear new findings and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm and purposeful life wherever you are on your ADHD journey. Here's today's episode. Today, I have a really fascinating guest. Her name is Claire Tumay. She's based in Dublin and she is founder of Ireland's first ADHD coaching collective, a platform dedicated to empowering ADHDers to thrive. Claire is an experienced international speaker and facilitator where she also delivers programs and supports to schools, colleges, workplaces and sports clubs. She works with professionals, entrepreneurs, creatives and also in the public and private sector organisations. Claire, welcome to the podcast. I know we're going to delve into lots of fascinating topics today. So welcome. Thank you so much Kate. I'm so delighted we were able to get the time eventually. Yes and yes, and eventually is the operative word because we sort of had to reschedule for a few different times. And I think it's really important to share a little bit about why I always try and make this podcast the most accessible it can be. Most of my guests are neurodivergence. We always understand that there's, you know, differences in energy and perhaps motivation, but also just burnout and life. And Claire, you have suffered with long COVID and the impact of that on how it shows up sort of every day, alongside your ADHD as well. And I've sort of discussed this in different episodes, but not really gone into the depths of it. Now that's why I thought it'd be really interesting to get you on. So the people can hear your story and maybe reflect on on their own as well. So maybe you can explain a little bit about your situation. Yeah, of course. So I contracted COVID right at the very beginning. So there were no vaccines of time. It was 20th of my 2020. And I was living at home with my parents at the time and all three of us contracted it and all three of us were having very different experiences with it. Kate, my mom actually ended up in ICU and was ventilated. So at the time, I didn't think that I was that sick, right? Because it was, I was comparing it to the extreme version that my mom was having. And of course, at that point, it was being kind of packaged as this 14 day virus. You'll recover after it and it only affects people who, the elderly or immunocompromised, right? And I was like, I don't take any of those boxes. So it was, first of all, it was a shock. And then second of all, I didn't really realize how sick I was. It was actually months later when I was in therapy for support and realized how on how on well I was. So now what happens now is, you know, I still have lingering chronic fatigue. I really struggle with motivation and what interrupted us having this podcast, as you know, was because if I catch anything, a virus or an infection or a flu or a cold or a hangover, like if I've been out later something than I before, Kate it wipes me. Okay? Like absolutely wipes me. And I've never experienced this before. So it doesn't go away, right? And it's only because I ended up doing a lot of advocacy work. And we were being given out to because we were calling it long COVID. And I'm, to this day, I'm still like that is the most perfect description of what this is and what it's doing for people. So when I first was sick, you know, I did have hallucinations in saying fever. I was in bed for five days. And at one point, Kate, I actually thought I was dying. It was so intense. I hadn't eaten anything. I couldn't drink. I was drinking water and couldn't keep it down. And I was monitored remotely from the hospital. So I did go into hospital and they sent me home. And I was monitored remotely and with mad equipment and medication and everything sent to the house. So I was, you know, supported. I knew there was somebody there, but it was terrifying, absolutely terrifying. Eventually the fever broke and my 14 day period last. And so I just got back up and went back to all the things that I do, Kate, which is yoga, walking at the time. I was doing CrossFit and I was in, not the CrossFit area. I was in a gym and I was running. I see Swam, I Zarned, I yoga every day. Like I was really healthy. And so we were in a lockdown in Ireland at the time. So I was doing these pieces at home, okay. And it was about another four weeks before I went back to work. And it was an online session. My first day back was online. And after about two and a half hours, Kate, I felt incredibly unwell again. I developed a migraine and I have never had a migraine before in my life. My brain fog was insane. And my body just, I couldn't hold myself up in the chair. And so I have to step back out again. And so I went through this period where I felt like I was going through COVID all over again. And throughout the rest of 2020, Kate, I made several attempts to get back to work. And I kept having what we now call flare ups, okay. But in 2020, it was so severe. And something to do with like the viral load or the pathogen that was stuck in my body. Every time I had a flare, it was as if I was going through COVID again. And I would be testing, convinced I had picked it up again, put the tests for negative. So I was looking because I was attached to the hospital. I was an outpatient, right. So I was able to go back in there and say, what is this? What's going on? You know, and they were starting to see their doctors, their nurses, their admin staff. They were also, some people were also having difficulties. So they could see something wasn't right, okay. But at the same time, Kate, I had never felt so alone because people couldn't grasp it because I looked well. Right. What does a sick person look like, right? And so in certain environments, I was being what we call medically gasele. Okay. Like I had people who were denying my experiences, who were telling me I should get over myself. I was just having the most horrific experience. And so at that time, I was like, like, so I am diagnosed ADHD. I've experienced trauma and mental health challenges before. I knew that this was different. Okay. And so I also was very lucky, Kate, my GP, my doctor, the practice where I was growing up, they were phenomenal because they had experienced post viral fatigue before. They were telling me it's not in your head care we've seen it before. But I was infuriated. And so the US and the UK, I turned to Google and went looking for resources online because you guys were a little bit ahead of us. Right. It had hit their first. So people were starting to talk about long COVID and there was group forming. And so I was able to engage with people and made some phenomenal contacts who we still check in with each other to this day. But there was nobody talking about in Ireland. And I was getting awful grief from work. I ended up setting up something in Ireland then, right. I set up the community in Ireland. And that was part of where I am today. Like, I feel very lucky in like to be able to meet with you today and have fun and enjoy this because there are people who started the journey with me, Kate and they're still in pretty bad conditions. They have never returned to work. So I ended up quitting my job. So I was social care worker. I made an attempt actually first. I quit the full-time job and found a part time job thinking maybe I could manage that better. That didn't help. And then in January 2021, I handed in my notice and I was like, I have to work with my body and let this heal especially Kate because nobody had any answers. Yeah. Right. Well, no answers. Can I ask, where did the ADHD diagnosis come in? Was that before or after? So this is actually funny. I got diagnosed with ADHD in 2015. So I was five years aware of my ADHD. I had worked with my coach and I had built a life that enabled me to mind myself to function the way that I needed to, right. And I often credit the journey that I had been on with my diagnosis to the strength that I found. And the like, if you know, 10, no, not 10 years ago, 20 years ago, if you had told me that I would have experienced and did what I did, I did after it. They'd been like, no way. Like I ended up on national TV being interviewed in print media doing other podcasts like this, all talking about long COVID. And my advocacy, because that part of the advocacy in me and and the confidence in the self-esteem, that came from finally identifying. comfortable with who I was and what I needed. So my ADHD diagnosis massively supported my ability to endure what I had to, you know. Yeah, yeah, so it's interesting. So you got that diagnosis five years before obviously contracting COVID and going through what you did, which sounds horrific. I mean, I have a, not it's not similar, but I contracted COVID right at the very beginning as well. I went away for February half term with my family. We went to, went skiing in a big resort in Italy and every nationality under the sun was in this sort of all inclusive hotel and we came back and I'm convinced my daughter picked it up in the kids club because she got really sick on holiday, coughing and everything but because she was a toddler at the time, she sort of just got over it within about five days. She's done a really chesty cough. I came back. So this was like the very end of Faireb early March and I had what I do, what I knew was COVID and I called up the NHS, help line I called up all sorts and it says no, absolutely not. If you've not been to China or Iran, I seem to think it was, it wasn't even Italy at the time and there's no way you could have this COVID-19 coronavirus. I was so so ill, so ill, took me weeks and weeks and weeks to get over it. I think I lost my sense of smell, I talk about six weeks to come back, my throat, my chest, nothing was, it was like months before I was normal again and I was saying in verticals, I actually give it to my mother-in-law who got very, very ill and I felt horrific, she was almost hospitalised. It was horrendous time and what I noticed after that and I still don't know that it's connected or not but I felt like my perimenopausal symptoms came on really quickly. Grey hair, it was like I sort of like aged something in me, something cellular, aged within me very quickly. Obviously pandemic for kids, ADHD symptoms had already been there but everything felt accelerated, it was like someone pressed fast forward and everything had been lying under dormant within me. Listening to you right now and I've sort of talked about a bit, it's been a while, like COVID kind of feels like, if stuff is a bit triggering in a way to talk about when you start thinking about it, it feels like there's dystopia nightmare that we've kind of put to bed and there's little reminders that come up and then when you talk about it, it's like I was so ill and my ADHD, everything kind of came out from there because I got diagnosed in the November of 2020. My perimenopausal symptoms started around the same time a bit later on, it's hard to and pick it all a little bit. Do you, are you hearing similar stories and I guess the people that you've been in touch with who've suffered with lung COVID, what percentage are neurodivergians? I just want to speak to something you said there in relation to myself because I got diagnosed with perimenopausal last August. So my hormonal experience while I was dealing with lung COVID was phenomenal and in the group, so there's a group with nearly 4,000 members in Ireland, there's still people joining, because there's still people, people only realizing this is what's happening for me, you know, years on after getting diagnosed or not getting diagnosed but contracting COVID, you know, with a start or midway through, but the amount of women I don't have percentages because I'm not a numbers girl, my brain, my brain, I'm absolutely dyscalculate or yeah, and to be honest, this is probably the problem in case it's massive ease to this day still under research, you know, but every single woman that I met has had hormonal issues, has had fluctuations with their cycle, has had full-blown PMDD that they have never ever experienced before. PMDD is an official diagnosis but symptoms that were equate to that that they have never experienced, okay? And so it's like what you said, it's like how do you pull that all apart and what do you treat, right? So it became really difficult then, of course, and you had to find somebody who had the paid, find a medical professional who had the patients and was happy to respond to what you were describing, you know? And in terms of your question around what's the percentage of people who are neurodivergent who have contracted COVID and experienced lung COVID, I'm sorry, I actually don't know that often, my head either, but when I disclosed my diagnosis in the group, then other people started sharing that they were too, right? And I spoke to somebody recently, and again, I can't remember the researcher's name, but somebody was telling me about research that we know says that neurodivergence are more likely to be unwell and to have health issues on a long going basis, you know? Yeah, as you're speaking, I'm writing down all the different conditions I hear time and time again alongside especially neurodivergent women. And these include muscle activation syndrome, histamine intolerance, inflammation, so that I'm sort of using that as the umbrella term, chronic fatigue, parts, hypermobility, gut issues, migraines, PMDD hormonal issues and conditions such as endometriosis and a polycystic ovary syndrome. The list is ongoing and we're creating now like this this umbrella and vent diagram of so many overlapping conditions, which all kind of are sort of cellular inflammatory, so it doesn't surprise me that lung COVID is just part of this picture, this very hazy picture, which unfortunately, you know, this such little research, but what I do know is I'm just finding the book here, Dr James Castell, I don't know if you've read his book, How to Thrive with ADHD is a fantastic book because he's, first of all, he's a doctor, a psychiatrist, but he has investigated the many, many co-occurring conditions of ADHD such as fatigue, migraines, neuroinflammation and muscle activation, pain and ADHD. There's a whole thing here about COVID and lung COVID in this book. He's been on the podcast, I mean, I highly recommend anyone to listen to that episode because not only is he validating everyone this experience, he's beginning to understand it, he's doing more research, he's collaborating with different specialists across the world, I know he's working with the top professors in these different areas, so people can finally get these answers and it's not, you know, oh, I've got this and I've got this and it's all a coincidence, it's like, no, you have got this, he calls out, I think it's like a super syndrome and being able to understand this better because as you know, you know, to be gasslet and to be told it's in your head and then you're questioning yourself and you're questioning your own resilience and is this all in my head? Am I going crazy? It makes it exacerbates the stress levels even more and as we know, cortisol increases inflammation in our body, so it's kind of this cycle that we're desperate to break, like no one wants to live like this. So what I've understanding your ADHD was the key to having the life that you truly deserve. I want to tell you a little story that when I was diagnosed with ADHD at 40, I genuinely couldn't find the support that I was craving that I needed, nothing that acknowledged both my neurodivergence and this need for my wellbeing to improve and that's why I started this podcast and I also have written the ADHD Women's Welping Toolkit which is now out wherever you want to buy your books or audiobooks and it's the compassionate practical resource I wish I'd had five or six years ago when I was initially diagnosed. It's a holistic guide for people like you and me combining our lived experience, my lived experience, expert advice from many of the guests that are on this podcast and empowering tools for navigating the many symptoms and traits that we experience such as anxiety, RSD, fluctuating hormones, burnout but also learning ways to lean more into the creativity and joy which help us grow as neurodivergent women. So currently we understand that ADHD is affecting nearly 3 million people in the UK, yet up to 70% of women remain undiagnosed. I really hope that this book helps you make sense of your experience whether you're newly diagnosed or waiting on this very very long list and as my publisher DK puts it, but although Kate's book can shorten this very long NHS wait list, it offers something practical and empowering to do so while you wait, it's a source of comfort, community and champion time and time again. I just want to let you know that the book is now available so please do grab a copy wherever you get your books. Now back to today's podcast. What have you noticed is helping, what's working, let's give some people some hope, how do they advocate with themselves? Yeah, absolutely and I just want to say as well when you were describing that book to me and I'm going to go and put that on my list now to get and you mentioned that the doctor is validating. Right, that is the, to me, first step, right? I never, when I went into the hospital, when I sat in front of doctors, I never had unrealistic expectations. I knew the whole world was dealing with something new. I was landing in our laps for the first time. I didn't want them or expect them to fix it and to have all the answers, right? But it is that it's that validation piece. That to me, like, is, is key in terms of us being able to move forward to fight it, right? If we feel like we're supported, if we feel like people believe us, we have strength and terror and you need it, like, I work as a coach and you need that in yourself to go and walk in and get your assessment, right? You need to believe in yourself and believe what's happening for you to be able to walk in and tell the doctor, I don't feel well. This is going on for me. So when people are throwing their hands over telling someone, that's ridiculous, that's not possible. We have to be really careful and think about what impact is that having on them and their ability to move forward with whatever is going on for them. And so I found that, right? The medical model wasn't supporting me here. It wasn't working for me. One of the things that they had suggested and started trialing in Ireland, and they're still doing to this day was a drug called LDN, low dose, low track zone, I think is how you pronounce it. And so it was used for people generally, like a high percentage of it was used for people who had overdosed. And they were using it like 1% or 5, or sorry, 1 milligram or 5 milligram, okay, but it didn't work for me because I was already on a stimulant with my ADHD medication and it just made me feel more anxious. So when I wasn't getting answers and when I realized it wasn't going away, I sat back and I said, okay, my body is trying to tell me something here. Now, I know I was fortunate because I didn't have a mortgage. I wasn't paying rent at the time. I was living with my parents. And I had the opportunity to step back. A lot of the people that I have met Kate didn't because they were parents and they have bills to pay. So I was supported to leave my job. And so I rested Kate. I literally rested this thing out of my body. Now, when I say this thing out of my body, I mean the extreme experience that I was having for the first three and a half years, okay. And then what I did was I turned to, so I mentioned earlier, I'm a yogi. So I would have experienced, like I'm very spiritual person. I would have experienced breaky and heying and acupuncture and all of that before. So I turned Chinese medicine to functional medicine. And I went to absolutely everybody and anybody who was interested in talking to me, right? So I did acupuncture for about two years. And that was a game changer. And I actually found a paper this morning on acupuncture for a long time. But I must give it to you actually so you can put it in the session notes. And I went on a weekly basis for about nine months. And then we reduced it to two weeks and then three weeks as we went off. And that enabled me to like he tackled specific, he responded to the symptoms. Having, right? We tackled the symptoms I was experiencing. Another thing I tried was kinesiology and homeopathy, right? So using combinations of herbs and supplements to support those things that you mentioned, the inflammation. So my histamine levels went through the roof. Like I'm currently, I saw someone describe this recently in the Lankovid group. You're allergic to your own tears, right? With the increase in the histamine, I would have experienced or suffered from hay fever, you know, coming into the summer months. And before, but it was like on another level since COVID on another level. Okay, like I've been away and abroad in the last year and a half. And I have had muscle flare ups where I can't even see out through my eyes. My skin all around it is raw red. They're itchy, burning and constant weeping. And that is a common experience for many, many people with lung COVID. I used to do salt rooms, okay? Because I suffered a lot with my lungs. I had a huge difficulty breathing and that went on for quite a while and my experience shortness of breath. And also it put pressure on my heart, like I was having heart palpitations a lot. So I was doing salt rooms to try and help clear the lungs, relax lungs. I was doing breathing techniques, like kind of stronger. Like I would have done Wim Hof before and I would have done different types of breath work through the yoga training. I have done, but I was trying really intense one on one breath work sessions to try and help Canberra sympathetic nervous system and to try and expand the lungs. I did eventually get in with a lung COVID physio and what we did there was retraining my lungs on how to breathe, right? So you know the way the body and the brain stores memory from what we experience. So my lungs were like constricting. They weren't working properly. So I literally had to learn how to breathe again. What else do I do? I really watched my food and I was eating like a lot of watermelon and tomatoes. Like you know anything that was like anti-inflammatory foods basically. What's interesting is tomatoes are full of histamine. So yeah, I mean, I'm just I'd be interested to know if you if that was part of it, but I think I love tomatoes. But I'm also aware that I'm sort of quite histamine intolerant. I'm like, oh, I just like pull back on certain things that got histamine in. But yeah, I mean, I can hear what you're saying is like your every aspect you looked at and you had that privilege to be able to have time off and rest and use all this amazing like holistic advice and guidance and medicine. And you talked about the nervous system. If you think about again, I'm not a doctor and I'm kind of like speculating here, but I can only imagine that COVID what that's doing to us on a nervous system situation and also from a cellular perspective is putting us in like stress mode. It's putting in this like fight or flight mode like our bodies literally fighting. So our nervous system is going to be fighting and that that increases all the stress response, the inflammation in our body. So tackling nervous system regulation and really kind of trying to bring in more of this parasympathetic state in our nervous system. For you was that the bigger picture for you is like your nervous system regulation. One of my appointments, a doctor said to me, I was asking, what is going on with these like recurring COVID infections that it feels like I'm having. And he was saying, well, it sounds like so what we knew with what I knew for me personally at the time. And then what other people started to talk about as well was that when I made an attempt to walk to the ice. So I remember walking to the ice cream shop one day, right? And it's a 10 minute walk around the corner from my house. And halfway through I had to sit down. I was panting. I was sweating. I was mortified. I had to sit down on the ground because my heart was racing. I had no idea what was going on in my body. I was scared. And I was like, what's going on? Like what is the trigger? And so it's the stress, right? Like so when we're exercising, when we're moving, moving, the body starts to then try and protect itself, right? And so the body, the physical body had been through a trauma with COVID. And so I had to bring it back into the paracetetic nervous system and to help it kind of heal from that trauma, right? That like, I would have been someone who practiced that regularity, right? With yoga and stuff before. But it was so hard and so uncomfortable to do this post COVID. It was incredibly difficult. I actually, I couldn't do it with myself. I couldn't bring myself through it. I have to do it supported. So either a breathwork facilitator, I was attending with a meditation teacher. We would meet once a week for an hour. The last thing I want to say about the nervous system regulation is I see this with people I work with. I see this with family members. When we're used to that stress response, when we're used to that fight or flight, it can be really uncomfortable for people to slip in to rest and digest, because it feels alien to them, right? And so that's terrifying in itself. And what I can say to that is, you know, get someone to hold your hand with you or to hold your arm and your shoulders and to just let you know. So like those incidents that my parents were saying, what we call an ambulance and I was like, no, just sit beside me, rub my back. Breathe with me, help me to tell the body in the brain that it's fine that it's okay because and the main reason case that I was telling them not to call an ambulance was because I knew that people were going to tell me, oh, you're just being anxious off you go. I knew I was going to be ghastly again, you know? And that in itself probably increases panic and stress as well. I think it's so important, you know, we talk about the nervous system because very often we've not even thought about it. Like it's just not been like, okay, that's the root. That's the foundation of what impacts our health and it impacts our sleep and our gut health and our hormonal help and our adrenal health and all these different things with ADHD for us to find that rest and digest state that parasympathetic state. It doesn't come naturally to us, you know, long COVID or not, we are almost wired to be in that stress response state because that's where stuff gets done. That's where we feel productive. That's where we feel like, you know, if I just stay in this place, it'll be fine. Like I'll be able to just get through this and I have to constantly pull myself back only yesterday. 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And I hadn't gone to see someone else and I hadn't advocated for myself. I had no idea where I'd be today. So I want to feel like they have the right to get second opinions. I know how exhausting that is and how costly that can be, right? But just because you're sat in front of a professional with a qualification in a certain area doesn't mean that you don't know your reality and what's going on for you. And I think I want people to know that they can seek a second opinion or like you said, work with someone abroad or like what I did, right? I went to the US and be okay to see what was happening there. And something else that's coming up for me as well, you said it earlier and something you said just there tweaked it again for me is sleep case, right? So like when before diagnosis of ADHD for me, my sleep was, oh, I'd be awake till 4 a.m. and then I'll put 7 a.m. to go to work, go to school, you know? And it had such a toll on me. And then when you throw in a chronic illness, right? It is very difficult for people to be able to switch off, right? So if you're trying to function and be productive and survive, you know, environments that are overstimulating and maybe you're masking in them, then you're also trying to symptom manage. It's very difficult for people to get into that safety, that that rest and digest to allow their body to go to sleep. And so I did a huge amount of work on sleep post diagnosis and then I had to go and do a huge amount of work post illness because my body felt like this, you know, after being processing and trying to respond to different symptoms all day long. And oftentimes I would get into bed at night, I'd have restless legs, syndrome, I'd have like sometimes the symptoms seem to be 10 times worse at my time. So therefore, you can sleep, you know? And I think that if people were to ask me, you know, what were your two things, I would say pacing and sleep. Because sleep gives your body this chance to recover, and it gives you the mental capacity to be able to endure whatever is happening the next day, you know? Yeah, absolutely. We can never underestimate the impact that sleep can have. And so if we can, I would always say prioritise your sleep hygiene, always find ways, just find ways that work for you. And again, it's for everyone else's different. So yeah, thank you, thank you for bringing that up. Claire, it's been really fascinating talking with you. And I know that just this conversation alone will just help a lot of people feel hurt and feel, you know, like their story that matters, their experience matters, and then they're not alone. And where can people find you if they want to maybe work with you as a coach, but maybe if there's any kind of place that then you can direct them to if they want to be part of your Facebook group or anything like that. So in terms of coaching, am I ADHD? Where my website is ADHD Connections. L.A.E. and my Instagram handle is @ADHCconnections. And then in terms of long COVID support, you can go to Facebook and it's called long COVID aren't simple as that. Great. Okay. Well, I'll make sure it's all in the show notes as usual. But thank you. Thank you for this conversation. You know, five years later, we can't underestimate the fallout that COVID and long COVID has has had on a generation from so many different aspects, mental health, physical health, and now you're a divergence. And I think we're going to learn so much more moving forward. We'll probably look at back at this conversation in five years time and think, oh my god, we're only scratching the surface. But I guess that is what is happening and we can't jump ahead and maybe our nervous systems might not be able to cope with, you know, too much information all at once. So like you say, we need to pace ourselves and give ourselves lots of self compassion for everything that we've gone through. And also like give ourselves a pat on the back for the resilience that you're you know, the fact that you're here doing what you're doing supporting others. And so many people who are getting up every single day and looking after families and working and doing what they can to, you know, contribute to this world. So yeah, I always say lots of self compassion and recognition for everything that we are doing, not just noticing all the things that we can't do and struggle with. So Claire, thank you so much for this conversation and hope to speak to you very soon. Thank you so much, Cage, for having me and for also making this a piece of your podcast. I know that it's an important topic and it's nice to know that it's not being forgotten about because as you say it's five years down the line, you know, it's a big anniversary. So yeah, I really appreciate it. No problem. Thank you, Claire. If today's episode has been helpful for you and you're looking for even further support, my brand new book, The ADHD Women's Wellbeing Talk is now available to order from anywhere you get your books from. I really hope this book is going to be the ultimate resource for anyone who loves this podcast and wants a deeper dive into all these kinds of conversations. If you head to my website, ADHD Women's Wellbeing.co.uk, you'll find all the information on the book there, which is going to be out on the 17th of July. Thank you so much.