Creating Community & Leading Better Research for ADHD Women - Dr. Lotta Borg Skoglund

In this episode, Sam chats once again with the wonderful Dr. Lotta Borg Skoglund to explore ADHD in women - with a special focus on the unique challenges they face, including hormonal influences and the critical role of community support. Together, we delve into important topics that highlight the intersection of ADHD, gender, and life changes.

Key Points Covered:

The Importance of Non-Ad Content

• Sam shares her dedication to providing authentic, valuable resources to listeners, like Letter Life, a support platform for women with ADHD, ensuring that her recommendations are heartfelt, not paid endorsements.

Challenges in ADHD Treatment & Community Support

• Dr. Skoglund explains the difficulties in finding effective ADHD treatments and stresses the need for strong community support. They discuss how platforms like Letter Life allow for peer advice and shared experiences, fostering a supportive environment.

Navigating Hormonal Changes and ADHD

• The conversation highlights how hormonal shifts, such as those experienced during perimenopause, can significantly impact ADHD symptoms, including memory and language. Dr. Skoglund emphasizes the need for more research in this area.

The Importance of Research on ADHD in Women

• Dr. Skoglund advocates for more comprehensive research focusing on ADHD in women, particularly its relationship with hormonal changes and burnout. She shares insights on how individualized approaches to treatment, with careful tracking, can be most effective.

Letter Life and Goddess ADHD Projects

• A deep dive into ongoing research project through Letter

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Transcript

 Hello friends. Thank you for tuning in again.  I have once again, been lucky enough to have a chat with Dr. Lotta Borg Skoglund. She is, as you probably already know, but I have to introduce her because how many accolades does this woman have?  Co founder and medical director of letter life. She has over 25 years of clinical experience with ADHD. She's a senior consultant physician, as well as associate professor in psychiatry 

at the department of women and children's health at Uppsala university. 

  the department of neuroscience at Karolinska Institute.  She is the author of six books with another on the way, which we will talk about in this episode, I cannot wait to read it.

As it's planned to be released first in English. So that'll be a first for her.

She's co-writing it with her self-proclaimed work wife. Dr. Helena Kopp Kallner

And it will be full of practical tips that you can use as an art over to a woman to help get through life with a bit more ease 

and a quick note, before we dive in. If you enjoy this podcast. Please share it. Please subscribe. If you don't already hit that little plus button. And if you can, I would really appreciate if you write a review, those helps this podcast grow, which means it's helps me continue to get amazing guests so that we can all continue to learn on this journey together.

 Now as has become pretty standard for me, we just jumped straight into the conversation.

So let's get into it.  Enjoy. 📍 

 

Thanks so much again for carving out time. 

I know you're great 

to, to, to talk to you and to see you and to also everything that you're doing, like all these amazing, like awesome stuff that you're doing. So great to see you. I'm just, yeah trying, trying. 

I always struggle when I talk about letter life, not because it's not genuine, but I worry that people are like, Oh, is she just getting paid? And that's why I'm always like, it's not an ad. It's just genuinely a really good resource that everyone should be accessing.

 . I'm just like, let's talk about it as much as we can and get it out there as much as we can.

And that's what, oh, I'm 

really grateful for that. That's awesome. So it means a lot. Really means a lot. 

I think that is like the most powerful stuff where going into to  the community  and reading all these like amazing stories and also all these like really generous advice that that people are giving to each other and women are like paying forward.

So I think we need  some Thing like that

that's what I was just thinking. It's hard because it's not just because you're Sweden based, but  it's such a multi prong approach because you are doing the research and you're working with researchers, but then also you want the lived experience and you want  more, for lack of a better term, like lay people  who are speaking about it and spreading that word of mouth, but then also  contributing, like you said, like the community board, I think that's one aspect that probably could  be talked about more  for letter life is the community board aspect of it because. 

They're such good, like you said, sharing and people being really open and really just  vulnerable. It feels 

like it's such a safe and generous environment that it's also so helpful for so many people. And, and I, I get contacted  By women every day who's been like so uplifted and felt so seen and, and also finally, got the energy to do something because the advice is coming from someone who's actually walked.

in their shoes. So it's so much easier to take that advice than from healthcare professional that can often feel very  like anonymous or, or like, so they don't really understand or understand or see how I struggle. And then it, the advice also becomes like tainted by that. So I think that's, it's a lot of things that we need to factor in here to understand 

why you don't act on the advice that you may get from, from healthcare. 

And sometimes it is that just that little bit difference because In the app, there is still technically healthcare advice. There's advice from you and other clinicians, but it's tailored to be specific for someone who has struggles with executive functioning, which is what so often when you go to your doctor, , they don't know that.

Like, they're just literally not educated enough to understand how to break something down enough, and  I've talked so much recently about,  the mental load of motherhood. Among other things, but how even something like making dinner, it's not just one task. It is  40 different tasks.

It's like a thousand 

different steps that can go wrong. So it's, I struggle with that all the time. It's like so many things that could, that could go wrong. And that's also one of my, I think, main  reasons for procrastinating. It's because I see all these different steps before and I see where it, where it can just, goes out and then it's like, oh, it's no, it's no use in trying.

And that's 

the struggle I think with,  I think especially so many late diagnosed women is. As a coping mechanism, we have learned to be perfectionist to try and catch ourselves before someone else catches us.  And so often we do get caught in that overwhelm of like, if I can't do it perfectly, if I can't do it just right, I just won't do it at all. 

That's so great that you're saying that because me and, me and Helena.  We are writing this book and we've been doing that this for like three, four years now, but now finally we have this deadline and it's in September. So we will send it away there. And this is actually what I am, what we are writing about right now.

And in the final like chapters, trying to give it. Like really practical advice without, because we can't do it as healthcare professionals as we can do when we sit with a patient in front of us giving this tailored advice to that person. , but it's still there's so many things that, is generic  for, for us  as women with ADHD, as mothers with ADHD , or and autism.

There's one of the, the, the most, the more like pleasurable parts of, of writing this book is actually to collecting everything that we have gotten back from Letter Life as well, and also from our, our patients, the feedback basically, and, and try to do it  in a way that  Feel meaningful and, and productive.

So that's, it's going to be so great to hear. And it will, will come out in Swedish and English at the same time. No, no, only, only English actually. So this is like, this is such a Yes, but this is such a, a project. We, we embarked on this crazy journey, but it's obviously it will need a bit more editing, I think, because this is not our mother tongue obviously.

You 

say that, but like, I don't think there's any, maybe you feel the struggle, but as As the other end of the conversation. It does not feel like  you have any struggle with the words.  

That's great to hear because that is actually one of the things in my perimenopausal brain that has  taken the worst hit that is finding words and remembering names.

And then especially then I can have like days now that I've never had before, but where I just like wake up and. Cannot  speak English. It's like I cannot find the word and I never know beforehand  if I'm going to end up in a podcast like this, let go  sitting like  a fish. It's like, what am I trying to say and how come you know, these things that works so well.

I can stand, on a huge stage having a, a keynote speak without even preparing. And then some days that I don't know why my. My perimenopausal hormonal brain just will not speak English. So that's and they can go so fast and up and down and I, and I, I associated extremely with, with the perimenopause actually.

It is.  And it's, it's funny, I was just having this conversation with a friend. So I'm 37, she's 45. We went to see a show on the weekend, like, kind of like a comedy show and a Big part of it was perimenopause and I said to her I said that is because I've just just started  In that little journey and that's one of the main things I'm noticing on top of like my emotions not being okay but I forget words and just like you said and the weird thing for me is I can feel it in my mouth like I can literally feel the word in my mouth and oftentimes I can visualize the letter it starts with but like  the rest of it just doesn't  come.

No,  exactly. And that is scary. No wonder so many neurodivergent women will seek out their healthcare professionals asking if they think they are developing dementia. No wonder when this is like, it is like my, brain is this sponge with a lot of holes in it. It's like there's things that is not working at all.

And then suddenly these things are working. And it's like, so it's very, very ADHD when you think about it, like, okay, it works one day, the other. So more of that than dementia really, but both annoying and almost fascinating, I would say because it's, it is Obviously for me that it is also tied to, to hormones.

I. Great. I have been debating doing, like, experiments on myself. That sounds terrible.

More like, because I already track, obviously. Big help and thanks to LetterLife.  But, I track, and, say with my emotions, It has gone from  pre perimenopausal, like when I was just normal I would have one or two days where I was incredibly  aggro and irritated and I just hated everything. Now it's becoming  10 days  and it's  erratic.

It's not every single day, but some days I'm just incredibly overstimulated by nothing. Some days I'm aggro, but it's not every month. And that's been the key. I'm like, is it the months that I don't ovulate? Is it the months that I ovulate? I'm just debating starting to run these little tests. Have you, 

have you listened to the, the talk by Helena at Letter Life, the one that is, that is recorded about the perimenopause and menopause.

She has a longer lecture. No, I haven't seen that yet. No, but you should, you definitely need to see that. Because one of the take homes there was, because this is actually my, my experience as well from late, my late thirties, basically that it  when it was just about PMS, then I could so clearly tie it into these days and okay, there are more days and there are like, but still there was some kind of pattern that I can, can understand.

But, but then when it comes to, to perimenopause, estrogen levels are declining in a swinging matter. So it's not like it's.  Constantly  going at because then you could also relate to that. And I think as as ADHD or as neurodivergent women, we are very tough in that sense. If we just understand  We're happy to join that battle also, as well, right?

So we do that as well. So it's fine, just bring it on. But if we don't understand what's happening, then things become really, really difficult. So I would say,  understanding that, because I thought that, Okay, but everything is just declining, so I should feel a little worse every day. That's fine. But no,  it's  like, Wow, I am this I'm super and then and so this is what's happening and I think for me then and I obviously you need to talk to  a gynecologist and discuss if like menopausal therapy is feasible for you but to a great extent I feel like a lost generation  where we were advised not to even consider that because our mothers did.

And then these, women health care initiative study came and we realized that that hormonal therapy could be associated to, for example, breast cancer. So that has been the truth for a long time. And, and as long as I've actually, when I studied medicine and I think maybe that's also one of the reasons for why I know so little and, and my colleagues know so little about this and I'm also like, really, I've, I've studied this , I am a woman myself, I have, all the, the factors that, needs to be there, is there, and still, I, I feel like I know nothing about it.

about this. And then I would say, like, the, the woman who is not educated in medicine, what do they know about this? They must enter, menopause. I entered, like, completely blindfolded, completely. There was such a surprise when I went in and I said could it be like perimenopausal? Like, no way.

But let's look at your ovaries. And know, there's not many  left.  Probably, it is not , dementia, because I could, fantasize up every, single reason for why , my brain was failing me. 

So  I have age working against me, because even though my doctor is very informed about hormones, she doesn't really want to put me on hormones just yet. Like, if I really insist on it, she will. But her first was to want to put me on oral combined birth control, and I said, 100 percent not doing that, bad history. 

And also  quoted the study that ADHD girls are more likely to have depression, only to back up my own personal experience. And then she said try progesterone only. And okay, my issue, I've never tried progesterone only, but I know of similar to the oral combined. So many neurodivergent women are extra sensitive to the progestin.

Versus a bio identical 

progesterone, 



 Because what I would say is for one group of women that we meet, the combined pills, especially for PMS and especially for, for early perimenopausal symptoms can actually work.

The, what we think is that it is  for those also ADHD women that you forget to take them and, and your hormones fluctuate even worse. So if you. Yeah, so that is also perhaps one of the reasons why this didn't work when, when we were younger and that it might work now when our lives are more predictable and you can put that together with your baba that you take every day.

But when we were a teenager, maybe our lives wasn't like arranged.  So there are a lot of potential or, or different explanations  that needs to be factored in and needs to be also part of this kind of not very explored field of research around this. But I would say your lived experience, , you need to take that very high into the level of evidence in that sense.

I think that's one of the most important parts to, to factor in. 

And I think some.  Doctors, just in general,  for someone my age and even into the early 40s kind of age of perimenopause, it is suggested that they suggest some type of contraceptive, but in my case, in my situation, my partner's had a vasectomy.

Like, we don't, we 

don't, we don't need for that. So that's why 

I'm like, can we just skip that? Yeah. So the very tailorable, fine tunable.  Yeah. You can take that out of the equation anyway. 

So that's the thing. Yes. That's a good thing. 

Cause that's what I, I have to try and remind other women when we're talking about perimenopause that  I think there might be this myth that you can't get pregnant.

I'm like, Oh no, you can very much still get pregnant. Your chances are lower, but you can still get pregnant. Yeah. Yeah. And your cycle is so erratic that tracking is not really on your side. 

Exactly. No, no, no, no, no, no. So I think that's, that's that's the very common case actually , that you feel safe  about that, but nothing is 100%, not even like the most like there are, there are grades of how, how well protected you are, obviously, but, but there is also a contraceptive is only as good as as a user. 

Exactly. 

I'm curious, like with hormones and perimenopause and all of it,  we know, obviously. When we look at like cyclical dosing, we know that  without any intervention, our natural cycle is estrogen peaks, it drops, progesterone comes up a bit and then everything restarts.  When we look at perimenopause, like we said, it's like this erratic decline.

It's not just a smooth, smooth landing. When HRT or  MHT comes in place and that helps to stabilize and raise levels,  but you're still having this erratic.  Decline. Yeah. So how is say, like stimulant medication, it's obviously still affected by the baseline estrogen levels, but is there any way to make that less hellish for ADHD women going through perimenopause?

Yeah, that's a, yeah, that's a really good question. And this becomes so super tricky and I see it in my patients all the time because when we finally can can disentangle what is going on in the PMS or in the like the more traditional or  the menstrual cycle. So then we have to add this extra like dimension of of not being able to rely on the cyclicity of the menstrual cycle.

of the period.  And that is so difficult. And when you, when you add MHT or HRT, what you do is basically that you, you increase the baseline level of estrogen. So what it's, it's intended to do, it's like, it's going to prevent you to drop below that level where you get the physical symptoms and also where you get the increased risk for dementia or the increased risk for different,  Cognitive impairments.

But, but that is that is just the baseline. So what we do there is that we increase that baseline and then we can rely on that our ADHD medication have that baseline to drop down on. But then you have the exact same thing as will happen in some women during the menstrual cycle, namely that during ovulation, when estrogen levels get high, you can experience this kind of increased energy and not always in a good way.

So you can experiences that you get scattered, you get stressed out, you get irritable you get more impulsive, maybe. And and, and this is so very difficult. And, and the only kind of advice that what we have right now is to keep tracking and trying to understand and  for some women, it's actually easier to, to break it down a little bit.

And, and so I always advocate that long acting stimulants should be kind of the, the base because what we don't want is, is add to this  going up and down.  But, it also becomes more difficult to tailor than if, if you feel like, okay, so a couple of hours into this day, it's like, Oh my God, it's one of these days.

And I took my kind of higher dose of, of this long acting stimulants. So this is going to be hell day. So then one way of thinking about it or discussing with your healthcare professional will be like reducing.  The dose for the long acting and then add like, short acting that you can take days where you think, okay, so this was actually really too low for me today, but we're not there yet where we can actually predict into the future this erratic  pattern of  perimenopausal estrogen fluctuation. So that is really, really difficult. 

And then we have, like I play this fun game with myself and a perimenopausal symptom going, I'm starting to feel heart palpitations and I'm like,  is it just my baseline hormones? 

Did I take too much medication? Or is it perimenopause?  

Yeah, yeah.  But you know what? Your guess is as good as ours. And when I say ours, I mean the researchers and the clinicians here, because we're not there yet. So I think you should be, I think you're very wise to line up as many hypotheses as you can.

Because, because again, then, This is something that we can live with. What we can't live with is having no explanation for why, hell breaks loose and it's like clusterfuck day today or clusterfuck week. So what,  I think anyway, that so many of my, my patients with ADHD, they're super tough when it comes to this, but they need some hypothesis.

Okay. So you have 10 hypotheses then. Is it perimenopause? Is it the medication? Is it a bad sleep due to my kid running a fever? Is it stressful at work? This is also why we have tried to design this 24 7, ADHD 24 7 model to also have the questions tailored to that. Maybe we can live with not having the exact scientific based answer every time, but just bringing up all these hypotheses on the table is, for me anyway, it's a little bit soothing because I'm not, I'm not crazy anyway, because that is, there's always been my biggest fear and also sometimes being actually  Emphasized, or as you say, like,  even enforced by friends and partners and colleagues and healthcare professionals, like,  what are you doing?

 And for me just to be, basically, It's like validated and he doesn't have to give me a formal answer. He doesn't have to say like, this is how it is.

He's just doesn't say that. Okay, yeah, this is a, it's a valid hypothesis.  Let's see what happens in two days. 

But that's how we, we find anything out is you start with a hypothesis, right? Like that is, that's the base of research and scientific evidence. And,  

but to be validated in that, I think that is something that I've missed in the healthcare system, because when I come with this hypothesis, it feels like, like healthcare professionals are, are, are rather bothered or feel inadequate if they.

Can't answer my questions. It's like, oh, it's in your head, or you're just, making this up. Or because, and I, and I can definitely, if I take all on my other hat as a healthcare professional, as a doctor, and, and I have a patience, having a thousand questions where, I realize that I don't have the answers.

I can feel kind of inadequate there. And I can also feel like, wow,  I think it's it's good that it's four weeks until she comes next time. Because, I don't want to feel like this because all these questions and I have no answer. So that is tough on you because as a doctor, you want to do good.

You want to help your patients. And there are all these questions that I don't have any answers to. So I think that's also something that we have to be very, very careful about. Like self aware of as as professionals. It's like, you know what this this crowd they have heard this. 

There's not enough research. They have heard it so many times. You and you can't just leave them there. We have to do something and we have to to build this hypothesis together. And obviously we shouldn't experiment. If, if we are uncertain about what we're doing and if we think that if you can't like make sure that what we do is, is safe. 

But  who am I if I say I can only do what is evidence based and then say, and then there is no evidence. Wait, either you have to wait until you become a boy or you have to wait in Sweden anyway, it's, it's a lag of, I think mean, a mean lag of 17 years before a research finding actually is implemented in the clinical practice.

So it's similar. I 

know it's similar in the US and, and elsewhere.  

So when you, when you're working in a field like Helena and me. You will either have to tell your patients to wait until, basically, they're, these questions are not relevant anymore because they're not in perimenopause anymore or they're not ovulating or they're less, so I think maybe you have to be a little bit brave and radical and a rebel in, in a sense, , if you want to do something anyway,  because otherwise women will try to seek these answers in even less informed sources.

So there will be all these. Places where you can buy this or that and you can take this or that hormone or vitamin or blah blah blah that is absolutely not informed by any And and also even more dangerously, they don't even admit that so they say this is you know science say or or research tell or something like that and then they roll out a lot of 

pseudoscience 

and 

Or they cherry pick their information.

I see that in so many,  I don't even want to call them like supplements,  just, mineral and adaptogenic  combinations that are coming out now, powders and drinks and etc. And they'll cherry pick one piece of actual research about one thing in their product that might be. 0. 2 percent and they will say it has ingredients that help with blah, blah, blah.

But like the amount of that ingredient in there is not even enough to make any type of difference.  Exactly. Yeah. 

So that is a charlatan trying to, to like rip you off money, , but even worse , is those that you see like, Oh, so there is these amounts, this amount of vitamin A, for example, and vitamin A is super important and if, if this amount is good, then double the amount should be twice as good.  And that is where the ADHD brain can just spiral down that rabbit hole.

And if you're not transparent with what the other end of that message is, namely that. Vitamin A, for example, is teratogenic. It can cause  birth defects in your, in your child or, or even worse. But often, as you say, if you cherry pick your research, then you just frame it in a, in the way.

It's not untrue, but it's not the whole picture. And that can, in a world that is so complex as the medical world, that is actually dangerous.  

And I think that's why we're so lucky that there are practitioners and clinicians like yourself that you're, you're involved in both sides of it. You're involved in the actual research, but then you're still working with patients and you can take what you learned in your research last week and have that inform your approach with patients. 

And if more and more doctors and clinicians and professionals,  obviously, they don't have to be researchers themselves, but if they just stay up to date on the research,  it will help. But I think that's also why going to someone who, like,  even if they just say they have a special interest in blah, blah, blah, it's  ADHD, like.

My psychiatrist is someone who has worked specifically with ADHD for the last 30 plus years.  I know he's going to be slightly more informed than just a, I don't know if I want to say generic, but like,  a non special interest in ADHD psychiatrist.  

And it's definitely, yeah, yeah, but, but you have to have the heart needs to be in there as well.

You have to have the interest and you have to have some kind of passion for what you're doing. And I think that's, that's that goes for not, not only for ADHD professionals, but for everything that you do in your life. So it's better if you have some kind of like, a passion that is more than just because I can collect my salary.

Okay. On the 28th of this month, so so not saying that is what  people mostly do, but I think sometimes when we are kind of of not feeling validated. It can either be that there is no interest. No passion for these kind of questions, or as we said before, because we trigger feelings of inadequacy with questions that is so I would say one of the most important things for me that I have brought. 

back from research would be how humble you have to be and how humble you have to be for what people are telling you. What Heian and I are trying to do now in, in our new research platform where we're trying to build a research platform for all us tinfoil Hat Syndromes.

  Is this through 

Goddess?  

Yeah. 

. I wanted to talk about it, huh? Before, because I think it's adjunct to what Letter Life does. Yeah. But separate and it's. Yeah. So interesting. So can you go in detail? 

Definitely. Yes., because  our research group, we have me and Helena and Lisa Torello is also a professor of psychology.

at Karolinska Institute in Stockholm. We have founded this research group. We call ourselves the Goddess ADHD, and it stands for gender informed research to overcome diagnostic delay and emotional dysregulation through self awareness and self efficacy in female ADHD. So it's a huge acronym, but it's also a huge project.

And , what we have decided to actually focus on is  what we're talking about the clinical the everyday life. Of being a girl or a woman with ADHD, what is significant for their testimonies and, and their lives and their stories and their storylines.  And what we can see when we do these qualitative studies is and, and also what we see from our previous epidemiological studies is that.

First  and foremost, you feel abandoned. By healthcare, and that is such a paradox, since we women with ADHD, at least Swedish women with ADHD, we consume 10 times and the healthcare resources compared to women without diagnosis. So we are pretty expensive.  And we are pretty expensive since we're not getting the right help.

I think what we are doing and what we are hearing when we do these interviews is like, but they don't listen. So I have to go somewhere else. And they, they said that I'm just imagining this, this, This problem, this IBS problems, but I'm really worried that there is something that it is might be something, because it is really impairing for me and then I have to go to someone else and then I have to go to someone else.

And then so I think what we're seeing is a kind of perfect storm of. Not realizing, not validating what these women are actually experiencing, and then having them thrown into this kind of flipper game of healthcare utilization and consumption due to a lot of comorbidity,  obviously, but also to what we think, what we call with very much love, and I'm really I'm  People are so welcome to contact me if they feel offended by this kind of syndrome that I've tried to invent, but we call it the tinfoil hat syndrome.

I'm not sure if that is the same thing in  English, but in Swedish, that is basically what doctors are saying behind these patients back. It's in their head. And reclaiming what people are actually calling them. We said, why not? We call it the tinfoil syndrome.

Okay, because this is actually so a large part of what the healthcare utilization is all about. It's about things that never really are, diagnosed with , a code of diagnosis that is actually said, Okay, broken limb or whatever. But, but this is just like symptoms of, symptoms of fatigue.

Symptoms of some diffused pain. And then there are these diagnostic entities that are also  partly part of this, symptomatic diagnosis. We don't have any etiology behind it. Fibromyalgia.

Kind of like fibromyalgia. Yeah. Exactly. Fibromyalgia, IBS, like, diffuse pain symptoms post COVID in a sense, where we have the etiology, but we still don't know why certain people are so much, like, are struggling so much more. So all this where. We, again, cannot back this up by science, but people are continuing to tell us that they are suffering. 

And so trying to reclaim that and trying to understand that because we see that, that neurodivergent, women are overrepresented in all these kind of diagnostic entities. And then we have a Swedish diagnostic entity that is specifically only diagnosed and have a diagnostic code or ICD code in Sweden.

That's burnout. So that is exhaust  symptom that is. That is carved out , in the Swedish ICD, from the Swedish National Board of Health and Welfare and designed a diagnosis for that, like an  adjunct diagnosis so we have like a a ongoing experiment in Sweden with this exhaustion, burnout diagnosis that is not recognized, that is  probably being labeled or diagnosed as as  something like fatigue or  adverse.

So reaction to stress or, or like prolonged fatigue or something like that. That is what we will want to explore and look at in our future in the, in this goddess ADHD research paradigm, basically. 

Interesting. I love how, and I know it's a small ish, not landmass necessarily, but small ish population wise.

Country Sweden,  but there is such a  culture of research and of using the population to get information and to actually put funding towards that that. We don't see  basically anywhere else, and even other countries 

that are quite unique in that. So outside of the Nordic world,  Sweden, Denmark, Finland, Iceland and Norway, we're, we're pretty good at that at, at collecting data on a more structured national level, but I think even 

other countries that have social health care, because that obviously is a factor, right?

Like I speak to other Americans who are still in America and they're like, I can't even go see a doctor because it costs so much money. But even like I'm in Australia, we have social health care.  It's not done.  And it's I really think so many other countries. This is like one of many things that we could look to the Nordic countries and learn  

from.

Yeah, hopefully. Yeah. So there are pros and cons with that. I say that as a clinician, I would say perhaps that a little bit  too much of my Working day goes to hunting this diagnostic code of this and that and that because, there there's a cost to entering all this data into all these registries so that we get the best possible data.

But obviously, as an epidemiologist.  I'm again, then super happy that me as a clinician did that because then I can do all this great research 

so with goddess, you are looking specifically at that burnout code that's been created. Yeah. So we are trying to 

do trans professional research. So the goddess, it's gynocologists, psychologists, midwives, they're nurses, they're, they're social workers.

So we want, like, to have a representation and, and there's also, obviously patient representation. So we have forums and, and panels with patients that  is involved in every step of designing the research. So that is one part. And then we also have this multi method approach. So we're doing epidemiological research.

We're doing qualitative interviews. And then we're also now applying to the ethical board of Sweden to do research on letter life data. So  as a letter life user, you can choose and you can opt in to also do that. Contribute with data to research. And that will be then research exploring cyclical dosing, for example, if you are doing that together with a healthcare professional.

What is your experience with that? And also all this tinfoil diagnosis where, okay, so what's your experience with that and what, what was helpful and how do ADHD medication, for example affect? These somatic symptoms. So we're really interested in in the real life experiences and the real life outcomes of women with ADHD and  the different aspects of the ADHD life.

And obviously also then with the autistic traits and those who have comorbidity with autism, because that is also extremely interesting and difficult to get good data on since in the DSM IV, we were not allowed to actually diagnose both patients in the same individual up until 2013.  And we realized more and more how like intertwined these.

And two diagnoses are, and especially probably in girls and women. 

And I think too, I don't know how you would do this because there would be no data, but looking at someone like myself, so I'm officially clinically, whatever you want to call it, diagnosed ADHD, but I'm only self diagnosed. Diagnosed autistic  in part for a lot of things, my citizenship status being one of them, me being very low support needs and in a,  I've very much manufactured my life in a way that I don't need accommodations.

I work for myself, etc.  So I won't most likely seek a clinical diagnosis. But.  I still exist. I still am. And that's where I think like your, your interviews and your speaking to patients is so important because you're not just looking at the data points.  You're looking at the individuals as well.  

Yeah. The individuals and  the trajectory across life, I would say also.

So, constantly being informed of also what has been and, and I think that is something that sometimes we forget when we talk about, Oh no, everyone should have a diagnosis in the summer I've been  in. So many media discussions with scientific reporters saying, but you are, you're thinking about this in the absolute wrong direction because all these women that are now getting ADHD diagnosis, they, are they really the only thing that they have there like hormonal imbalance or whatever it's like, , they're perimenopausal symptoms.

And, and then we try to. Try to help them to keep more than one thought in their head at the same time, because you have to look back, obviously, if someone has, has led a, like a problematic free life up until the age of 47, then suddenly explores like sleeping problems, executive problems, cognitive difficulties then you should probably like, suspect hormonal factors and, and perimenopause.

But if their life has been like a lineup of like, failing at things , or masking or compensating and, and constant, like repeating yourself in, in certain difficulties and areas, then, then you probably  couldn't just settle for the, the hormonal explanation. You probably will have to realize that this is. 

Perhaps a capable woman who have arranged her life living at the absolute maximum of her cognitive capacity, making it like,  like white twists every day. And then when the hormone starts like failing her and her brain starts failing her, the strategies are not in place anymore. And then the symptoms.

Will display  for people around him and her. 

Yeah, and both can be true. And I think that's what people struggle with. And that's, we, so we did talk about this just to remind people, they can go back to listen. We talked about it in our first conversation, which I'll link about how to sparse out the two, is it, is it perimenopause, is it ADHD, is it both? 

And the analogy that I've used, I made like a piece of content around it. I, I just use blocks and I'm like,  as we build in our executive function demands and our responsibilities, and finally there hits a place where like the tower can no longer  balance. That's really good. Yeah, that's a really good metaphor.

And that's when that's when you figure out you have ADHD. And for me, it was motherhood. My block tumbled over for some women, it's perimenopause for some women, it's having their third kid.  It's always something that makes your tower fall over. 

Yeah, 

but it's sparsity. I think 

we're and again, you have to have all these hypothesis.

You have to be open to the different hypothesis. So neuroscience, doesn't matter how how desperately we wanted to be, but it's not the exact science yet. So this is you have to be again humble. To that. There are these hypothesis and the research and the knowledge that we're standing on right now.

That is the best possible knowledge that we have today. And for me, being like a serious and honest scientist is always, being prepared to reevaluate your hypothesis. Always allowing for what you have thought and communicated and, and spend so much time researching when there is new data and there is new evidence, you have to, to at least look at it and see, is it possible to, often it's possible to fit this pieces together.

In a way that that doesn't throw over the entire paradigm, but  sometimes you, you may have to be, open to do that as well. And that's hard. That's difficult. But I think,  I think that's, that's absolutely one of the like core things that we have to, to never compromise with. 

And hopefully the media gets on our side a little bit because I'm really sick of seeing headlines of like ADHD is being overdiagnosed and also not helped by some very  popular  scientist and neuroscientist with very, very popular podcast and millions of followers putting out that ADHD is being overdiagnosed.

And it's like, you're looking. Potentially one section of the population and you're forgetting about women and girls and minorities and non gender conforming people.  

Yeah. And that again, having to, to being able to keep so many more thoughts in your head than just one because it can be over and underdiagnosed at the same time.

And I think that is what's happening now in Sweden, in this small country, there are huge local differences in the prevalence of ADHD.

Basically, it is tied to how the system is rigged. And that is really scary. And that is also  when people are talking about this and not taking responsibility for, for the downstream effects of what they're saying. And also the, the ingoing values. But it doesn't really say that much about, how ADHD affects society,  and then looking at another society saying, okay, so there are so many people asking to we're overwhelmed by all these people, all these women, basically often,  because it becomes offensive first when when the girls and women also are actually  requiring some kind of attention.

But.  We're overwhelmed with all these, they think they have ADHD and   they think they have everything and again back to the tinfoil diagnosis. Yes. Perhaps these women have been searching and looking for why they are not, making it in this life and functioning the way they should. So wouldn't we rather be interested in why so many percentage of the kids and the adults today.  Cannot get their shit together, cannot get their life to  work. So maybe it's a combination of us knowing more about ADHD, actually seeing it, diagnosing it correctly, and a combination of a society and a world that is so much more cognitive demanding than it was 30 40 years ago, because there's also something with the social media and the constant, digital  Access to everything.

Things are going so fast. And that is doing something definitely to our our kids and young people today and to us,  I find it much more difficult now. And I think that is partly. perimenopause It is my ADHD, definitely, because it's always been difficult, but it doesn't really help that I'm also constantly, distracted by all these things, and also that things have to go so fast.

All the time. So there's not really time for me to, try to apply all these ADHD tools that I am supposed to do because the world around me doesn't 

wait for it.  It doesn't wait and it's so stimulated and it's so full of instant gratification and it's so like just constantly sitting there and like calling your name like this siren just like,  

And that affects everyone, but it affects ADHD people.

In a certain way and borderline ADHD people like sub threshold ADHD will probably tip over to having a full diagnosis in an environment in a society rigged this way rather than an environment society school setting that is rigged in a way that is actually to the ADHD brain.

Yeah. Yeah I agree. I think there's so many environmental factors, but how do we slow the world down?  

Exactly. That is exactly my argument when people are saying, why do you keep diagnosing people? Why don't you stop?  The prevalence  is there now? You should stop now because there are enough.

ADHD people. We've reached our cap.  Exactly. We reached it. So stop. And I say what I will stop when it's a school and a society that will accept these kids as, as they are, but it's not. So the only thing I can do to improve their abilities is to stop. of succeeding in the world, not developing addiction and other psychiatric comorbidities, is to actually give them a diagnosis and the proper treatment for ADHD.

So that is what I'm going to do until I see some signs of the school system, the society as a whole, coming together and like creating  A neurodiversity   certified situation because, it's not , and again, I think , what's happening now, what is good, I think is that even neurotypicals are beginning to just like, but this is crazy.

We can't, you can't let the kids have their phones in school. No, you can't. And for an ADHD kid sitting with their phone in the classroom, there's not going to be very much information intake. Not for a kid without ADHD either, but maybe some so they're better off.  But the important message here is that ADHD adapted pedagogic, , settings.

is good for everyone. It is good for the, yeah, it is, it's, it is like absolutely crucial to the ADHD kid, but it's also better for the neurotypical kids than traditional like schooling. And, and it's also better for the, for the teachers. So it's, it's clearer and more structured and it leaves more room and energy to actually do what they're supposed to do.

So as teachers  it's like win, win, win situation.  when you design and, and rig schools according to what we know from neuroscience is good for ADHD brains or, and autistic brains. 

But not 

even just 

schools. That's like, I wish they would be better, but in general,  all the things that we know are like good for us as humans,  movement, fresh air, nature. 

Those are good for everyone, but they're like, especially good for us.  

So obviously last year we had  ADHD girls to women come out in English.  Yes. You're currently writing a book that will come out in English. Yeah. What about your other books that you've already written?  Is your publisher going to be releasing more in English for us? 

So what's happening now is actually that we are currently translating ADHD at work.

Oh, great. So that is, that is basically what we were talking about now. So we have to ADHD certify schools, but we also have to ADHD or, we call it neuroinclusion or neuroinclusion at work. Increasing the possibilities for participation and for also  informing managers, team leaders, HR staff about neurodiversity  and what, basically, what they have to gain from increasing the knowledge is important.

To to increase participation in inclusion and and to acknowledge and raise awareness about diversity and down the stream actually improve the efficacy and productivity of the workplace. So there's again so many wins here. If you just acknowledge that all brains are different. 

And the basic knowledge about neurodiversity can be used to apply like structures and knowledge increasing activities in the workplace. So that's I'm, I'm so super excited about that. I'm also giving a lot of talks on that topic now. And, and it seems like  You have come further in this department in the English speaking world than , in the, in the Scandinavian countries.

So I'm really look forward actually to having the book translated and see how it's received. Because yeah, it's going to be really, really exciting.  

Even as far as maybe some places have come, I still think there's a long way to go. And I think there's still a lot of things that are quite performative. 

By companies, and there really needs to be like some  substance. really going into like the whole amount. You also have a book not translated yet about adult diagnosis and you have a book about parenting. 

Yeah, exactly. So the, the first book, the, the first book I, I wrote was actually about motivational interviewing for parents.

And it's, . That's only in Swedish, 

and then I wrote together with Martina Nelson, who's a psychologist. We wrote to black belt in parenting. that has been  very well received in schools and for parents. And that's also a little bit of a broader perspective.

Not only ADHD, but all Neurodevelopmental disorders in children and very specifically guidance how you as a parent or a teacher or another adult around these kids with ADHD, autism, language disorders, intellectual disabilities all these different like disabilities.  And this is how you can, what you can do to support these kids and these families. 

And after that, it was ADHD at work, that is now currently being translated. Then there is Helena's in my upcoming book, then about ADHD and hormones. And I'm so super excited about how, how that is going to be received. We have you have a deadline, 

you said? So does that mean have like a suspected release date? 

Yes. So  it should be.

The, in the autumn 2025 then, 

I still think you need, in LetterLife that in the premium membership, you did the ask the expert. The AMA sessions. Yeah. Doing a joint panel with you two, I think would be.  Brilliant.  

We're trying to be very, like, responsive to what users are feedbacking us on requesting. So if, if there are people listening now and that would like certain things, then, then it's just  an email away and then we'll do it. 

I'll add that you have been generous enough to give me a code for 25 percent off premium for the listeners.

So that's in the show notes.  Yes, I would like everyone to do the premium version. But even the free version is like incredible.  Good. 

I'm so happy to hear that. It's always difficult. I would like to be able to do everything for free. But then we can pay the tech backdrop people who actually can make it good.

So it's like a, it has to be.  

It's such a well designed app, and it has so many features, , between Mindhub, the community board, the tracking. It prompts me every day, because of course I'm going to forget. It also prompts me when it's like, Hey, have you started your period yet?

And I'm like, Oh yeah, I forgot to add that.   I thank you once again for your time. I appreciate you just opening your brain and letting us all, Learn and yes, 

thank you appreciate these these talks and conversations there. There was you never know where they're going to end up and you just have the best questions and also so relevant.

Thank you for sharing and opening up  your brain and your life.  Amazing. And I know it helps so many people. 

Hopefully. We're both trying to, as you said, move the needle just, just a little bit as much as we can. 

Really. So nice to talk to you again. 

You as well. I hope you have a fantastic rest of your day.