The Dr Louise Newson Podcast - 164 - When ADHD collides with perimenopause with Margaret Reed Roberts

Episode Date: August 9, 2022

Margaret Reed Roberts is an experienced social worker and educator who noticed a change in how she felt in her late 40s. Along with more obvious symptoms of perimenopause, such as hot flushes and migraines, there came a deterioration in her cognition – she struggled to initiate, plan and complete daily tasks and the mental load became unmanageable. A friend suggested there may be more than perimenopause going on and questioned if Margaret was neurodivergent. In this honest and insightful conversation, Margaret shares of the ‘relief and grief’ of being diagnosed with ADHD as an adult and the impact she now understands ADHD has on her daily activity, home life and relationships. Margaret’s three tips for those who have ADHD or think they might have it: (provided after the conversation) Be informed. Knowledge is a game changer. You feel more confident when you understand and are better able to advocate for yourself. Challenge others where necessary, using your acquired knowledge and pass that information on. Don’t be alone; join support groups, talk to empathetic friends and family. Tell your story. You and your story are valuable, not everyone will listen or care, but the more we talk, the more we break taboos and stigma. Follow Margaret on Facebook Twitter: @geordiereed

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-Avon. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based, information and advice about both the perimenopause and the menopause. Today on the podcast I'm really excited to introduce to you someone called Margaret, who has been working hard, like many women do, behind the scenes actually to help.

And we've just written a booklet together with other team members about ADHD and the perimenopause and menopause, which is something that hasn't actually been spoken about before. And the number of women we see in the clinic means we're learning so much. through our patients. And we see a lot of women who have ADHD or just some traits, actually, that get a lot worse during the perimenopause and menopause. A lot of people find that their attention isn't as good or they ruminate a lot. They have quite obsessive behaviour as well, which can often worsen with low hormone levels. So we've produced this booklet that's come out. And Margaret has been working with my team and she's here today to talk a bit more about this.

So welcome Margaret. Thanks for coming to. today. Thank you. It's great to be here. It's a real privilege. Thank you. Oh, so do you mind just sharing a bit? Well, firstly, let's talk. I've just mentioned four letters and some people won't even know what they stand for. So medics are very good at that. We use lots of terminology that people don't understand. So do you mind talking what ADHD is and also about your journey as well, if that's okay? So ADHD stands for attention deficit, hyperactivity disorder. It's quite a mouthful. It is loaded with negative words. It doesn't suit a lot of people, ADHD. A number of us try to come up with our own what it means for each of us, the A, the D, the D, the H and the D in terms of positives

and strengths as a way of sort of reframing the negative labels. So it's a neurodivergent condition. It's not even a condition in a way. It's a neurodivergent type of brain. It's a neuro type, the brain design. Your brain structure is different and it's not only to do with some of the neurotransmitter chemicals. A lot of people think it's to do with dopamine only, but it's actually so much more than that. And that's the same with a lot of conditions, isn't it? There is a whole spectrum as well. And I think some people think you either have it or you don't and it's very black and white. And actually it isn't really, is it? There can be different degrees. And, And, you know, it actually can be a positive thing for some people as well, because we all use our brain in different ways.

We do. And it's working out how to turn it into something that could be beneficial. And I think there's so much labelling and, like you say, a stigma with a label, because often it's, well, we see it all the time in the menopause, don't me, because of misunderstanding. And I think with ADHD, lots of people think that's children, that's naughty children. You know, I've had people with ADHD in my clinical room and they've been opening every cupboard. They can't sit still. They've been fiddling with all my equipment. And it's so easy to just say, oh, that's a really badly behaved child.

No, it's not. It's an inquisitive child who wants to learn more. And, you know, isn't that great that they've got such a, you know, wonderful brain that constantly needs to be a relation. That's right. It's very interesting, isn't it? So, yeah, carry on. Just if you don't age.

So just some of the things you've said there are actually really helpful. And I've quite like to unpack a couple of things that you said in a way. You talked about, didn't you? a spectrum. Now actually, many, many people think of a spectrum as being linear, which is super unhelpful and not accurate at all. People who are neurodivergent, actually, well, I see the spectrum is when you're trying to go on your colour printer

and you get that beautiful colour spectrum, so many different shades and you're trying to find the exact shade, that is what a spectrum is. I do think in terms of what we understand about neurodivergent brains is you either do have a neurodivergent brain or you don't. But actually, I think, oh, high functioning, low functioning. And that applies to mostly, we've talked about that in terms of being autistic. But there's actually some overlap.

It's different, but it's similar. And that's not always easy to put your finger on. I'm not autistic. My eldest son is autistic. And my younger son has recently had a diagnosis. But only after I had my diagnosis. Normally it's the other way around. Yes.

Because it can run in families, can't you? Yeah, it's about 74 to 76% genetic. Right. Which is a lot, isn't it? So, yeah, chances are, if you are ADHD and you have children and you look back in your family line, you will see, and I also see it in my previous family line. And is there an association with ADHD and autism as well?

Yes. So for autistics, there's about a 50% co-occurring. But the other way around, if you're predominantly ADHD, the autism is much less. So it's absolutely, I mean, neurodivergents is fascinating. Our brains are amazing, aren't they? They are really interesting. But the label, the ADHD label, I know people say, well, why do you want to label yourself?

And actually, I don't want some label as such, but understanding ourselves or our child or other family members is so important. Understanding what we need, how we work, how we function. So that diagnosis has not been a label to me. it has been a roadmap back to myself. That's sort of the best way I can describe it because I lost all sense of myself. I didn't recognise myself anymore really. And then actually owning some of that

and recognising, okay, these are the reasons why I've been struggling. And that's actually, in some ways, it's freeing. I found a combination of relief and grief. Yes. That understanding of myself at 48. or like you look back on your life and there's a lot of different things you think so many missed opportunities that aspect of possibly feeling let down very much misunderstood

ADHD is so individual as well I'm not obsessive but I know there's an obsession and addiction with some people that doesn't impact me in that way ADHD is you can be the sort of impulse of hyperactive or or the inattentive or a combination. Mine is a combination, but I'm predominantly what you call inattentive, but inattentive isn't what we think either. It's really complicated,

and we really need clinicians to understand because there's so much to it. So you really, really need to be specialist in that element of psychiatry. Yeah, absolutely. And I think that's so important with anything is about individualisation, actually. And for too long in medicine, we've been giving people labels and diagnoses and trying to fit people into a box. And that's how we make diagnosis.

Of course we do. You need some of that. It's really important. We have this big net that we cast and we're trying to filter and filter all the time. But then when it gets down to it, everybody with diabetes is different. Everybody with migraines is different. Right. So then it's the same with any psychiatric illness and any disorder, even if it's not a disease.

There is a whole array. And actually, even for that individual, symptoms and manifestations can vary, not just day to day, but out of hour as well. And it all depends in their external environment as well as internally, what you're eating, how you exercise, what your relationship is with friends and family, all sorts of things. That's right. Yeah, we're not an isolation. It's all how everything fits together in our life. I mean, certainly for me, it is a neurodivergent condition. It's not a mental health condition. No. It's not a psychiatric condition. No.

I struggle in some ways that psychiatry is focused on this because I actually think we need neuroscientists. Yes, absolutely do. I know there are some psychiatrists who are sort of there's the overlap, but sometimes it feels a bit funny because I'm like, I'm not mentally unwell. It can impact me. It can make people mentally unwell. Especially if they're not diagnosed properly and don't have the right tools and the right understanding. That's right, lots of misdiagnosis. And then the impact can cause living unsupported, possibly unmedicated, or not understanding what is going on with yourself. But it's not just in the brain, actually, it manifests itself in your body as well. Yes.

In strange ways that people, you know, a lot of things can be internal for women. It looks different for women as it does in men. And the combination of ADHD and menopause, it's. a complete double whammy, isn't it? When we talk about gender bias and stigma, I just think, oh yeah, ADHD and menopause combined is just very, very hard for most women. And the new research is showing huge numbers of women that is the most impactful time of their life. Which is no surprise, is it? Because it is a, like you say, it affects the brain. And we know our female hormones affect our brain.

And what's very interesting is in the perimenopause, we've got great changes of hormone levels. And so I think a lot of these disorders are actually worse during the perimenopause than in the menopause when hormones are uniformly low. Okay, I'm going to hold on to that. Yeah. So when you have these big changes of estrogen, progester, and testosterone, it really can affect the way we think. And we know that some other conditions, so, you know, anxiety, depression, even suicidal thoughts can be a lot worse in the perimenopause. And, you know, our brains like stability, you know, any of us who have not slept well know how it affects our brain function. If we haven't eaten for long periods of time, it can affect.

So our brains like routine. They like structure. So anything that's changing or challenging to our brains is going to affect any other condition as well. And so it's very interesting that you said that you were diagnosed when you were 48. Is that right? Yeah. Yeah. So how did that come about then?

Because obviously you've been living with maybe thinking that your brain is working different to others for a long time. But did you try and get help before or did you just think that was you? So I think having a diagnosis now has allowed me to reflect, perhaps a little bit reimagine. That's quite painful to reimagine what it would have been like actually to have known, to kind of, I think, for me, information is empowering. I think it allows you to perhaps be a little bit more accepting of yourself. I think a lot of people with ADHD feel, or certainly in the past, and still do feel quite useless sometimes.

There's a lot of negative impact on us alongside some great strengths. So at 48, I was, I think probably my menopause signs started about 47. I noticed various physical symptoms of perimenopause. And then definitely the cognition started getting worse and then initiating things. So it's really hard to start things sometimes and it's really hard to finish things. Often we'll have lots of projects that are unfinished

because we get an idea and we'll go with it. Our brains actually like spontaneity quite often. So that's another difference. And whilst I don't have specific necessarily routines, which is quite interesting, I just go with what I want to do and how I feel. I do obviously have a family to consider. So I'm, you know, yes, we have to get up and have to get out to school.

Those are all things that you do. But I don't necessarily do everything in the same order for myself. Yeah. You know, I might brush my teeth later, might brush them earlier. Lots of people that have a regular routine. that's not me, when I might start cooking dinner, which is quite a thing now. So I noticed that I'd lost interest in cooking, that the planning got even harder of anything, you know, like going shopping and being overwhelmed by all the choice, making decisions

about things. And it was all the micro detail that often it's women that are juggling, I think. The mental load was just totally unmanageable for me. And I've always, you know, tried to juggle some balls. And I do drop some sometimes, but this just got worse and worse and worse. And then I think it was much more irritable, much more triggered easily. Obviously, with neurodivergent children, there's a lot going on in our home environment as well. And I just started, I don't understand what's going on. And forgetting words, struggling to find my words.

I'm usually somebody who's fairly articulate. It took me longer to say what I wanted to. It took me longer to process information. I just have a hundred thoughts going on in my head at once. ADHD stops you from prioritising those. And it's a very much an interest-based brain design, not a priorities and must-dos. So we'll do something that takes our interest

and put off the stuff because actually it's very, very effortful. It's not that we're not trying hard. It's hugely effortful and actually quite exhausting and overwhelming. I was going to say, it must be very tiring as well. It's completely exhausting. So people have, and that's a key sign, multiple burnouts for people. You know, mini burnouts, fatigue. You know, there's a big overlap there, isn't there, with perimenopause?

but you can imagine the magnification of that with perimenopause and then all those undiagnosed brain busyness. And it's different. I've experienced depression. I have experienced anxiety. And I imagine that is to do with the undiagnosed ADHD for 48 years, as well as some difficult personal circumstances beyond that. So those are the things I was like, okay,

so I also had really severe migraines that were triggered by perimenopause. pause and I was just ending up being in bed so much because I was so ill. I couldn't get over one before the next one happened. And then, so I realized something seriously wrong here. I'd started HRT. The physical things had got better. The cognitive things were getting worse. You know, you talked to my neurologist. I'm a dementia worker, I'm a social worker by background. and I was a dementia worker at the time. So I started questioning, do I have dementia? I was feeling quite scared about what is going on.

This is really frightening for me now. But very much it's internal and people don't see it. Yes. Well, I think as women, we do hide our emotions a lot. And, you know, I think there's a lot of misperceptions, aren't there? I think people look at me with the work I do and think that I'm very strong and that they can batter me down and be criticised my work. But actually internally, I'm really upset and I'm very vulnerable.

and I have a lot of time where I doubt my abilities and, you know, feel very, very tired and very emotional. But I wouldn't say that in public. No. And you're very public. Yeah, well. We are. And that's hard, isn't it?

And it means something to you. What you're doing, you're totally committed to what you're doing. Yeah, and that's what I'm obsessed more, actually. You know, when I'm criticised, I think actually they don't realize I'm not doing this for me. I'm doing it to help all women. But that's the same, you know, like you say, if you take your children to school, you don't want people to know that you're upset. having an awful time. You just try, and I think as women, and I am selling women here,

but as women, we pride ourselves in being able to multitask and to be able to do everything. Everyone looks at us actually all the time and that can be very, very exhausting. And then if we have perimenopausal or menopausal symptoms, which often include anxiety, self-doubt, feelings of reduced self-worth, unable to think coherently and properly, but not being able to compartmentalise things in the sense. same way. And actually, we can sensationalise emotions quite a lot as well, which is very, very common. So a small criticism, which normally I would have brushed off, you know, when I was perimenopausal, I would disperse into tears. And I know now, certainly with some of the bullying and toxicity that's

going on behind the scenes, if I wasn't taking HRT, I absolutely would give up my job. I probably would walk away from my family as well because the pressure is so intense. But I know I've got stability with my hormones. So that is making a big difference. But also stability of my hormones allows me to do a regular yoga practice, to sleep well, to eat well, to look holistically at my life as well and to sort out my head as clearly as I can. Yes. But without having my hormones balanced, it can be very, very difficult. And I think to do more research, which is woefully neglected in women's health, in ADHD, in perimenopause and menopause, you know, you said about, addiction, we see a lot of women whose addictive personalities come through again during the perimenopause

and menopause. I've seen a lot of women whose drug use has changed and gone back to how they were as a teenager or alcohol as well. They start off drinking just to numb their symptoms, but actually this addictive behaviour carries on it. It might be eating chocolate. You know, it might be other sort of behaviours and they come back during the perimenopause and menopause. And I think also when people feel bad about themselves anyway, they think, well, what the hell? I don't care if I'm going to injure myself by taking drugs or by drinking more alcohol. And then gambling is a lot more common during the perimenopause and menopause. Without ADHD.

So all those things are more without AD&G. And then ADHD will magnify those much more. Yes. Because the brain is seeking that dopamine. I'm not a very high risk person. though actually I'm quite an open and honest person and a lot of ADHD people are so our emotions it impacts our emotional regulation so we are you know we're deeply sensitive people but I I don't see what's wrong with that there's nothing wrong with that because we change things

you know we change our conversations we change the world with those where the canaries and the coal mine really we pick up on things that other people don't pick up on we might not verbalise that. Actually, we do say what we think quite often. Which is actually no bad thing at all. No, completely. Sometimes it's a bit much for people. And some of it will be with very flowery language. I swear slightly more to myself and occasionally out loud to friends. I don't swear very much, but I noticed that I had changed slightly. But I think for us, so you talked about the rejection, didn't you, through the really tough things that you have in doing this job. And actually it's a vocation, what you're doing is a vocation.

And an unrecognised part of ADHD is a thing called rejection sensitivity dysphoria. Yes. Where criticism and actually we can be our own worst critics and bullies in our minds because we do see how many things we drop and feel like we're failing. But actually rejection sensitivity dysphoria is something that is very, very overwhelming and it's a whole body experience. and often it feels like you've been punched in the stomach. It feels so physical.

And then there's that sudden rush of overwhelm, which can make you actually in that moment, but it can last, it can go on. Then it tips over into feeling suicidal. But I know that actually this is going to pass, and I've never, you know, most people wouldn't act on it. But I think we also need to be aware of, we need to be looking at suicide, right, with menopause.

Absolutely. Because it feels so hopeless. for people. And it's not. Yeah, but they can't see the way out. They can't see that they will improve. And as I'm sure you know, we're doing some research into suicide prevention. We're funding a PhD student. And this is all really, really important. And I think the other thing that is important, we talked about as individuals getting a diagnosis, which has been really important for you. But it's also about awareness for other people as well. Because I certainly know some of my friends who've got ADHD or they're all actually when I know what's going on, I can not get upset myself about the way that they are,

if you see what I mean. And, you know, once you understand people, and I've got a great privilege of, obviously, being a doctor, I see and speak to so many different people. And when you understand what's going on, well, you can never fully understand, but understand what's going on in their brains and the way they work, then actually your relationship as a friend or a colleague or a mentor can be quite different with different people. And your expectations might be different

because like you're saying, your routine is different. So it might be that, you know, you behave differently on different days, which is absolutely fine. But we all do, don't we? In some ways. Of course we do.

And with different people. Yes, well, that's right. But there are some people, like you say, you're very open and your challenge in your talk, which is really important. Whereas some people who are, who've got aspergers, don't read emotions. And they're very, very, very,

rigid in the way they think. And so I could be very upset thinking, oh, they haven't picked up how sad I am, but they can't read it. And so if you understand what's going on in somebody's brain, then actually you can be a better friend as well, because you know which are the bits that really are affecting that person and which aren't and how you can talk to them. And all this is building up to really be so important that we know. And I think the problem is also ADHD, ADHD has often been thought to have as diagnosing children, therefore it's a children's disorder. Yes. And it's not, is it? It's not. It's a neurodivergent condition. So, you know, mostly, but most people, ADHD, is to do with the brain they were born with. Now, who knew that

neurodivergent children grew up into neurodivergent adults? I mean, that's amazing, right? Yeah, rocket science. So it is that. And I'm noticing, you know, we've come quite a long way in terms of recognizing autistic needs. But actually, when we talk about neurodivergence, it's not just about being autistic. It's about some other things. Now, I know a lot of actually ADHD women that I link in with on some really great Facebook groups.

I found so, so helpful. That's made a big difference to me. We've even had a book group and tried to help each other. Sometimes, you know, it's a bit chaotic. People forget. people go off at tangents. And that's the thing with friendships and relationships. You get an idea. You're frightened, but you're going to forget it so it comes out. And often I think women say things and then their brain catches up. Yes. I know they're very good at that. Yeah. And that's even

more so for us. So I think ADHD women often have struggle, but I'm an extrovert. I'm a people person. I'm a social worker. You know, I've got lots of those things. But I think a lot of ADHD women are kind of quite introvert and then have hid themselves away and masked that. Yeah. And that's worse because it means that they're usually suffering more and they're unable to vocalise and verbalise and share. So, and that's where social media, it has its faults, but it can be very good because you don't have to verbalise and vocalise. You can absorb. But knowing you're not alone is really important. With anything, I think it's really important knowing that there are other people who may be better, maybe worse, may be similar

to you and to be unable to realise that you're not alone is so important. important. It's individual, but there are shared experiences. Yeah, absolutely. And if you've met one person, so as a dementia worker, we, with the dementia friends you say, if you've met one person with dementia, you've met one person with dementia. And it's the same if you've met one, you're a divergent person, you've met one new divergent person. Absolutely. We're all made amazingly and uniquely. Yes, which is good. You certainly wouldn't want two of me around. It's good. Absolutely. No, it's great. And it's, I'm really grateful for you spending your time today because it is always difficult talking about yourself.

It is. You feel vulnerable, but actually I see the bigger picture. Yes. And I know this conversation, there'll be a lot of people that will be nodding and will be thinking. And it's just planting that seed is a really important start to a conversation, actually. So I'm very grateful for your time, Margaret. But just before we end, I wouldn't mind just asking for three tips, really. And I'd like to just ask you three reasons why you think people should read the booklet that we've been,

working on together. What are the three good things about the booklet? Three good reasons for the booklet. Yes. Is that okay? Yeah, that's fine. I think one because ADHD is very misunderstood, very misunderstood within females. Secondly, because there is a significant impact on 95% of women who are ADHD when they hit perimenopause. That's serious. We need to look at that clinically, don't we? We really need to bed that in in psychiatry, GPs, and when we're treating and supporting perimenopause, we really need to look at that. That will change things. We have to take that one. So that's the second one. Third one, I mean, the booklet, if you want to be our allies, we need allies because we do get misunderstood. I think a lot of people do feel different.

I haven't felt different, but I felt really misunderstood. And there's a lot of pain in that and a lot of lots. Yes. The most important thing with all of this is about awareness, understanding, and also to start this conversation so we can start to build on some research as well. As many of you have heard me before, know that I'm very dedicated to research and we do give not insignificant amount of money for research from the clinic, but we want to do more, so building teams.

So if any of you are interested in research in this area, then please contact and we really need to build on that. It's really great that we're starting, but there's a lot more we need to do. So thank you ever so much for your time today, Margaret, and I really, really appreciate it. And I look forward to hearing feedback about the booklet as well. So thanks very much for your time. Thanks, Louise. Bye-bye. For more information about the perimenopause and menopause, please visit my website, balance, menopause.com or you can download the free balance app which is available to download from the

App Store or from Google Play.