Loss 45/101: Loss through a late diagnosis of ADHD: Margaret Reed Roberts

#074. Imagine being diagnosed with something that brings a huge amount of relief, but at the same time - a huge amount of grief.

This is The Silent Why, a podcast on a mission to open up conversations around grief, to see if hope can be found in 101 different types of loss.

Loss #45 of 101 - Loss through a late diagnosis of ADHD

Meet Margaret Reed Roberts from Cambridge, England. Margaret was diagnosed with ADHD (a neuro-developmental condition and stands for Attention Deficit Hyperactivity Disorder) at the age of 48 years old. 

Although this provided an answer to a lot of what Margaret had been struggling with, like why ordinary tasks seemed so much harder for her, she describes the diagnosis as coming with ‘relief and grief’ - the relief of finally knowing why she felt so different, but also the realisation of a lot of loss.

Since then, she has learned to recognise the strengths and abilities that being neurodivergent offers, the importance of the right environment around her in order to thrive, and the importance of not seeing ‘different’ in a negative way.

For more about Margaret, you can find her on social media and through the following links:
Facebook: https://www.facebook.com/margaretreedrobertswriter
Twitter: https://twitter.com/geordiereed

Menopause and ADHD:
https://www.balance-menopause.com/menopause-library/menopause-and-adhd/

God, Me and ADHD:
https://www.womanalive.co.uk/god-me-and-adhd/13207.article

When ADHD collides with perimenopause - podcast episode:
https://www.balance-menopause.com/menopause-library/164-adhd-and-perimenopause-with-margaret-reed-roberts/

For more about ADHD from a medical viewpoint, listen to - Let's Chat... ADHD with Dr Ned Hallowell:
https://www.thesilentwhy.com/podcast/episode/7d60344a/lets-chat-adhd 

Transcript

Margaret: 0:02

Hi, I'm Margaret Reed Roberts, and I'm here to talk about loss through late diagnosis of ADHD.

Claire : 0:13

Welcome to The Silent Why podcast. If you're new here- an especially warm welcome, if you've been with us from the start - a huge thank you, and if you dip in and out - welcome back. I'm Claire Sandys.

Chris: 0:23

And I'm Chris Sandys, and we're a husband and a wife on a podcasting mission, a mission to explore 101 different types of loss, to hear from those who've experienced them and to understand what part hope has played in their story.

Claire : 0:37

In this episode, we're chatting with Margaret Reed Roberts, who lives with her family in Cambridge in the UK, and has a background in social work. Margaret has ADHD, which is a neurodevelopmental condition and stands for Attention Deficit Hyperactivity Disorder.

Margaret: 0:51

I've lived my life feeling like my brain is constantly exploding and feeling like there's something wrong with me. I am not right. Actually, I am who I was meant to be, after all.

Chris: 1:04

Margaret says she spent years wondering what was wrong with her why ordinary tasks seem so much harder and why parenting running a home and holding down a career will often overwhelm her mentally. And then at the age of 48, she received a diagnosis of ADHD.

Claire : 1:18

Although this finally provided an answer to a lot of what Margaret had been struggling with, she describes it as relief and grief, the relief of finally knowing why she felt so different, but also the realisation of a lot of loss.

Margaret: 1:30

I no longer recognise myself really, I'd lost that time, I knew that I'd never really felt that I'd lived up to my potential, you know, things that I'd never followed through on or opportunities, perhaps, you know, even though I really wanted to a new that I just probably couldn't manage all of that. So those were some key losses that initially really hit

Chris: 1:55

Since then she has learned to recognise the me. strengths and abilities that ADHD offers and the importance of not seeing different in a negative way.

Claire : 2:04

And there's a good lesson in here for all of us about finding and allowing ourselves the right environment to live in, in order to thrive.

Margaret: 2:11

So plants and animals need the right environment to flourish, don't they? Each plant needs a particular type of soil, whether climate feeds to same with humans. And the more we speak our stories, the more truth and light comes into those things that gives other people hope - hopefully it's contagious.

Chris: 2:34

Before we crack on just a heads up that you can learn about ADHD from a medical viewpoint in the last episode, as Claire spoke to Dr. Ned Hallowell, a psychiatrist who's an expert in the field.

Claire : 2:43

Now back to Margaret, and we begin this conversation with her telling us a bit about herself.

Margaret: 2:51

Hi, I'm Margaret Reed Roberts. I live in Cambridgeshire. I'm 50 years old. And I have a background in social work. I have been recently enjoying exploring my grief through gardening.

Claire : 3:06

Gosh, you got me, I was starting to think about so many questions about gardening now. But the main reason you're here today is to chat through something called ADHD. So why don't you just explain a bit about what that is

Margaret: 3:17

ADHD, those letter stands for Attention Deficit Hyperactivity Disorder. It's it's loaded, just those words, that terminology we use. It is a neuro developmental condition. So it's actually how your brain developed. It's not a mental health condition. It's not a behavioural condition. It is just a brain wiring and structuring difference.

Claire : 3:47

And what are the sort of average things that would affect?

Margaret: 3:50

There's a combination of things for me, you can get diagnosed, you would, you have to answer lots of questions and they look at either - Are you on the hyperactive side of things? or the inattentive side of things? or you can be a combination. So for me, I have a combination. It's changed over time, was more busy, as a young person as a child, as I think, really in my 20s. But now, I mean, it's predominantly inattentive, but it's not actually, those words. It's about the regulation of many things, of many executive functions. they're called, of the brain. So that could be organising, planning ahead, making decisions, the prioritising what you do with your day, sticking to routines. Routine doesn't appeal to us, we just don't think client that we have a sort of very curvilinear way of thinking and doing things. And then it can be the emotions are felt really strongly. We have a very busy brain. So we will have many, many thoughts all at once. And then how do you prioritise or screen out some of those to work out what you're meant to be focusing on? Another big thing is motivation. And that is quite hard and motivation is not about'what is the priority? what is the urgent need?' our brain just does some things quite differently. And it's about what we're interested in what motivates us, which is linked to how our brain produces dopamine. So we have a lack of the neurotransmitter called dopamine. And there are a number of other sort of neurotransmitters that that impact, how have we function,

Chris: 5:53

You must have had to find ways to deal with a whole number of different responses from friends, family, strangers, when you meet them, when you talk about it. I'll probably come from one particular common approach, which is, I thought it was mainly something that you know, is diagnosed within children. So it's quite new for me to hear about it being an adult thing, but in your experience, clearly, it was a diagnosis that came later in life. So what was your knowledge of it before your own diagnosis or your awareness of it?

Margaret: 6:26

Yeah, not not a great deal. You know, in any detail. I think our eldest son is autistic, he was diagnosed when he was about 10, 9 or 10. So I had over a number of years began to understand more about neurodivergent brains. So brains that might be, you know, slightly different in the way they are different than the way they see things and experience the world. And so I began to understand a lot more and delve into that. And as a social worker that really interests me. You know, it's all about people about how we interact with each other. But I think I wasn't really aware of any friends or specific people apart from one who had children who are ADHD, and she herself thought she was, so I didn't have that much knowledge. In reality, I wondered about my younger son. And then then when I began to realise that I was really, really struggling in my perimenopause, and it was more than perimenopause, when I got HRT, it still was not sorting things. And then I took a step back and you look across your life, in there are lots of things that have been really hard for me that didn't seem hard for other people. That's when things came into focus and started making more sense than me.

Chris: 8:02

When was the diagnosis for you? And can you remember what your reaction was?

Margaret: 8:07

Yeah. So just over two years ago, aged 48, that's quite late. It was not a surprise to me, having understood more about it, and actively sought a diagnosis and realised and looked at my family, and looked at my genetics, and it was definitely something that really, really made sense. To me, my main description is often for me this relief and grief, really fun grief, definitely.

Claire : 8:37

Did it feel like a loss of any kind initially, I know. Now, looking back, you do describe the losses associated to it. Did it feel like a loss at the beginning when you first got diagnosed?

Margaret: 8:46

Yes, completely. So it's just like, who am I? What does this actually mean for me? Now, you know, I'm not quite sure where I've come from and where I'm going now, I think I'd found the whole experience of perimenopause, which had caused a lot of cognitive function, but I had also been physically really, really unwell. It had completely undone me, in many ways. I had suffered a lot physically, I no longer recognise myself, really. So I'd lost that time, I knew that I had never really felt that I lived up to my potential, you know, things that I'd never followed through on or opportunities, perhaps, you know, even though I really wanted to, I knew that I just probably couldn't manage all of that. So those were some key losses that initially really hit me, and then feeling really vindicated. And I'm not a fraud. I've always said I was struggling. I always said there was something that we still don't understand what what's going on for me and there's something wrong. That was it.

Claire : 9:57

I'm guessing that's something that's quite hard to describe. I've told the people that there are losses involved if they don't quite understand the condition and what's going on there, that means something that's been hard to explain to others or kind of show to others?

Margaret: 10:08

I think so, because we do think that grief and loss is associated with death, or something, you know, that's visible, visible in terms of perhaps, impact of it, an injury or an accident where you may lose a limb or physical, a physical nature of things. So yes, it's all it's all hidden. And that's the thing neurodivergent brains are hidden, and that sort of invisible, so people can't see the struggle often behind. Sometimes you'll see the struggle, but a lot of it can be hidden. Some people really do mask it, but a lot will be the the minutiae of your daily life, at home with your family, or just, you know, you're having to work so much harder than a lot of other people. Because what a lot of people don't know is or don't don't understand is that the simple things, or the other people take for granted that are simple and automatic, like prioritising organising, organising, easily remembering things, those things are really hard for us. But we can do really hard stuff, we can be really good in emergencies, we can have, you know, really big picture things to make amazing connections between things, are very passionate, a lot of us have really important social justice, when we caring, you know, we might run towards a crisis or somebody else's crisis and emergency whereas other people just run away.

Claire : 11:40

And it's hard when it's internal like that, because it relied on you to describe it and tell other people about it. And if it's something that affects your thinking in some way, then that's very difficult in itself from experience, such as hormone things, you know, when you can't verbalise it yourself, or you're affected mentally, yeah, it's then very difficult to kind of talk about it, but you're the one who has to talk about it, because you're trying to describe what's going on. I love the analogy used in one of your articles about it was like sand slipping through your fingers while you're holding a giant octopus.

Margaret: 12:07

Yeah.

Claire : 12:08

Things like that are really helpful, I think, to show people what it actually feels like, inside.

Margaret: 12:12

You can't actually even imagine that, can you really and that octopus and all those tentacles. And they've all actually I don't know if you've watched that amazing programme about the man who befriended an octopus? And how intelligent that octopus is, you know, the different tentacles have different skills and different functions. And, you know, that is the brain right? In many ways, there's, there's a lot we don't understand, we just take a lot of our brain functioning for granted. But particularly with ADHD, there's a lot I feel I can't take for granted at all, it just, I can't trust it to turn up when I need it. So that is a very, it really affects your self esteem and your sense of confidence and your belief in yourself - that that's huge. And through life, people have experienced so much criticism, and so much telling off, there's a statistic that I you know, I share that by the age of 12 children with ADHD receive on average, 20,000 more negative comments than a neurotypical child by 12. So you can imagine what that then means for the rest of your life, if you've already experienced that much negativity and that much struggle, and that's just with that, much more likely to have experienced some trauma, bullying, because of all of those things being different, perhaps struggling to fit in, feeling isolated. I just felt more misunderstood rather than different. Because I'm a people person, I actually, socially I'm okay. might talk too much sometimes.

Chris: 13:57

I mean, this listening to talk, it's, it sounds like there's so much that is good about ADHD, but we almost need to rebrand it as like an unreliable superpower. So it's, it's there, you know, there's so much good. It can help in so many good ways. Just not maybe when you want it to,

Margaret: 14:15

Yeah

Chris: 14:16

Or sometimes it just shows up at the wrong time or not at the right time, whatever it may be.

Margaret: 14:20

There are things you can do about that. But right, it's moving forwards, trying to reframe things and re imagine actually, there are a lot of strengths. And we always, always see 'difference' as something negative. We don't understand it. It's different to what we know in our experience. So we reject it and we see it as'other' whereas we're very, you know, we recognise variants in nature, you know, diversity, biodiversity, well, were biodiverse ourselves. So that is a really important thing. So plants and animals need the right environment to flourish, don't they? Each plant needs a particular type of soil, weather, climate, feed, it's the same with humans. And the problem is, we need slightly different and more supportive environment, than people whose brains I mean, we use the term neurotypical at the moment, language keeps evolving, and we keep reinterpreting what it means. But currently, they're they're sort of phrases that are recognised that people have neurotypical brains, and then people have brains that have, yeah, it's a different neuro biology. And it's your it's a whole sort of, it's a whole entity really, because it impacts you, you know, in all your senses, various biological responses to things. It's big, it's big.

Claire : 15:56

Yeah, it's huge. And it's problematic in itself, just calling other people, neurotypical in some ways, because a lot of those people in that category won't be neurotypical because they haven't been diagnosed.

Margaret: 16:05

Right. So it's looking like one in five people have a neurodivergent brain. And that's why you're seeing so many people come forward for diagnosis. It's not an epidemic. I mean, what a thing to say. It's just we're actually beginning to understand there's a lot more variety of how people function and how people do things. But autistic ADHD brains, they are really different. If you look at scans, ADHD brains have seven areas of structural difference in the brain, as well as how neurotransmitters work, which is different to people who don't have an ADHD brain.

Chris: 16:43

There's so many questions I could ask you about the wider topic, but we want to talk about you personally. Something you said about that initial reaction is a 48 year old really interested in that mix of relief and grief, and know from what you've written elsewhere that you found a lot of support through online communities. Is that element of relief and grief, is that quite common, or was that just personal to you?

Margaret: 17:06

It is really common. And I think based on on what other people say because you've you've grown up thinking you're less than that you're some awfully flawed human being who can't keep on top of the daily grind, who can't do things that other people can so that becomes very internalised but it can also be externalised for some people in working out their pain and their struggle. And the brain seeks dopamine, our ADHD brains seek dopamine, and that's through exciting novel, different fun things. But there's an overlap with ADHD, and addiction and risky behaviours as well, for some people. That's not been my experience, fortunately. But that does happen. So it's really, it's really complicated. But I think relief knowing like, actually, there's nothing that I could do any thing about, you know, this is who I am. And that's quite freeing. So that's what I mean about the relief, it's freeing, you're freed from some of that, why can't I fix myself? Why can't I do this? you know, this constant questioning and doubting that a lot of us experience and, you know, the low self esteem, I mean, in many ways, I'm quite confident, I'm outgoing, I'm an extrovert. I do know some of my strengths. But there's a lot inside, you know, just preparing for this constantly doubting myself. It's, it's, it's very real.

Chris: 18:48

And if you had had a diagnosis or that understanding, you know, 10 years, 20 years earlier, is there any thoughts that you have on what you wouldn't have lost what you would have gained, rather than having lost sort of that time?

Margaret: 19:01

I think I would have really gained a sense of myself more, I think I would have been able to perhaps avoid repeated burnout cycles. I think I would have had yes, a greater sense of myself though. I've always been quite a I've always been a person who's swim against the tide in a way and wanted I've always thought to be myself, other people, I think more introverted, ADHD is hide themselves away. Because I'm an extrovert. I've never, I've not had in a way I've just wanted to be me, and almost fighting to be accepted for me. I think perhaps that would have prevented some bullying. I've experienced as a child and as an adult. I think it would have allowed me a greater compassion towards myself, as well as hopefully other people feel quite let down quite often. You know, People didn't have I mean, times have changed, right? 70s, 80s, how we understand children and their struggles, but having that compassionate curiosity, what's behind what is going on for this person, child, young person, adult, what's going on? I can see this some struggles, what's that about? So that that would have been transformative. And then things, you know, I would have understood more. And I think, perhaps I would have learnt other ways of adapting. I mean, overall, I've probably done pretty well. You know, I was just like, what, how come I've got to 48 and not known, and nobody, and people haven't worked that out, you know, and have experienced anxiety have experienced depression. And a lot of people will have been misdiagnosed, or ended up experiencing anxiety and depression, because of their brain and not having the right support or access to medication that can help. So all those things, you know, I just would have had more support, I think and maybe found the right environment to to flourish even more.

Claire : 21:08

Obviously you've been through different types of grief in your life, how has it affected how you've processed and understood that? And did it change after the diagnosis in any way? Did you understand it in a different way?

Margaret: 21:19

So I've lived my life feeling like my brain is constantly exploding and feeling like this, you know, there's something wrong with me, I am not right. Actually, I am who I was meant to be. After all, my brains develop like this, this is part this is part of who I am. And that is sort of a process of radical acceptance, isn't it? To work towards accepting ourselves as who we meet? How we are, this is me. You know, The Greatest Showmen -'This is Me'. I used to love another song when I was a teenager, also the same name.'This is Me' by Climie Fisher, they are always things that have appealed to me and spoken to my my heart and soul. But I think my experiences of grief, I think I now understand why I feel things so intensely, why I analyse things so deeply. When I experience grief, whether it's my ADHD diagnosis, or the loss of something or some body I mean, I've experienced multiple griefs in my life - lived with with chronic health conditions and pain beyond beyond ADHD. I think it helps me understand that what I'm feeling and why I'm feeling is okay. The ADHD definitely, it's about your you do feel things very, very strongly. And it's just, I think that accepting that of yourself, being understanding and then being able to find words for that, to explain that to other people, to help them perhaps understand where you're coming from.

Claire : 23:03

Does it affect the length of time that you would grieve for? Does that make it any shorter or longer because of the feeling it that intensely?

Margaret: 23:11

I think that's, I mean, a lot more, we need to understand a lot more about how living with these brains of ours, particularly ADHD in autistic other things to think overlaps, dyspraxia, dyslexia, being a Torretta, all those things. I think we need to understand more. But I do think that there's a potential to get stuck in grief, because we have a tendency to ruminate, because our brains just overthink, you know, constantly making those incredible connections. But that can be to our detriment, I think sometimes, and being able to redirect that. Those thoughts and feelings. I think grief is unique for each of us, whoever we are, but I think there is definitely I think it's can feel more. And it's a whole body experience, and then it does make your executive functions even harder. Does that make sense?

Claire : 24:14

Yeah. Can you think of the effect it has on a neurotypical brain anyway, people talk about it, you know, it's stopping them eating, they can't think straight. They can't process they can't make simple decisions. When you think of the effect on the brain anyway, it will be a fascinating thing to be seen in more depth to see what the impact is on brains that aren't neurotypical and how how they respond. I mean, because I guess there'll be some traits that mean, they deal with it better in some way. And then there'll be some traits that it will be a lot worse because of that. Yeah, like you said, we're probably not there yet with with the science, but it would be really interesting.

Margaret: 24:44

It's a lot that we're, we're so behind on, you know, with understanding the impact, but it does, it does really make it just so it's so layered and complicated because of the executive function. It means I think being even more impacted. So taking more time, and I think the risk of real burnout, and depression, I think people probably need to be monitored more if they're, you know, divergent, because we have a much higher incidence of depression.

Chris: 25:15

When it comes to looking to the future, what's your relationship, like with thoughts, plans, ambitions, and also, above all of that hope, hope for the future?

Margaret: 25:24

And I think I'm finding my way, I mean, when I finally found my niche, so I didn't perform particularly well at school, I suppose, in comparison to other people, I did quite well. But for me, where I could have potentially I should have got better GCSE and A level grades, but I couldn't recall. I couldn't embed all that learning, and then regurgitate it. Our education systems don't fit us well, you know, we are we are fitted into something that doesn't really speak to our strengths, and doesn't support our struggles. But where am I going? And I think I'm finding, I've always been motivated by helping other people to feel better about themselves, helping other people live with challenges. That's what social work is about empowering people advocating, encouraging them to speak for themselves, you know, there's those listening, being able to listen and really be in people's lived experiences and the privilege of their stories and walking alongside them, and helping them see strengths. And then supporting the bits that they're struggling with. I've had, I had to give up the role I had before because of the burnout with the menopause and ADHD combination. And then I'm just so I've found a bit of a new a new direction, but it's still very much part of me and my skill set terms of trying to raise awareness of the impact, particularly female, ADHD, because there's been a ginormous gender bias, you know, like you said earlier about it being a boy thing. And when you get to adulthood, it's one to one, male/female/non binary. And across the world, if you actually peel away some of the layers of culture and and how things are, it's across the world, it's the same percentage really interesting, the the NHS, their data, they don't have any reliable data for ADHD and adults, it's really poor, we really don't have a good picture. I want people to feel that they're not on their own. I want people to feel that there is hope that the more you understand about yourself and how your brain works, the more you can do things to move forwards with that. And actually, if I think it's really grief is very isolating whatever kind of loss because it is quite hard to put into words, isn't it? It's a very internal process, and then just just making small changes for people sharing things like this, I think that's quite important to me, I'm motivated to change things for the better one person at a time really?

Claire : 28:19

Did you find yourself ever getting stuck in or asking the question why? Why me? Why have I got this?

Margaret: 28:24

So I think I had many, many struggles and losses through childhood and into early adulthood, and some traumatic experiences as well. And so I used to be very, very overwhelmed by those things. I used to find those really hard. But I got to a point, I think the turning point for me was when my husband was diagnosed with cancer, and we had lost three babies just prior to that. I was five weeks pregnant when he was diagnosed. Fortunately, that pregnancy continued, and that was our second child. But I think we got to that point where I'm like, why not? Us? Why not? Not why but why not? Because actually, suffering is just part of being human isn't it, really? That's that's how I see it. And then the turning it into something else, to walk alongside people to have greater insight, like you've done on these podcasts, using your losses, to relate to other people, and the more we speak our stories, the more truth and light comes into those things that gives other people a voice. It gives other people hope. Hopefully it's contagious.

Claire : 29:45

And it educates, doesn't it which I think is so important on subjects like this, it really gives people education of 'what is this?' because we only hear news headlines on Sundays on some of these conditions, and they're not helpful ones. So it's helpful to hear firsthand experience especially of late diagnosis as well because we do hear a lot about children more so. Have you found that other people have reacted generally in favourable ways or not so favourable when you've told them that you've had this diagnosis?

Margaret: 30:09

So I think erm, it's been, it's been mixed. But I think most people are friends who've known me for a long time. I mean, some people may have been surprised, or just like,'oh it's just you', which is actually quite, that's quite good to hear, isn't it? I think. And so I've, I keep in touch with people. So I have friends from a long time ago. So it has been useful to kind of hear what they think. And then more recently, people have seen, I think it's people who don't know you very well, or complete strangers, where you're having to explain that you're ADHD, and you need a reasonable adjustment, or this is hard for you, or this is why this has happened. It's not an excuse. I mean, it's just, it's just a fact. You know, I don't make too many excuses for myself, but sometimes people think, oh, that's just an excuse for being lazy. And of course, those are messages we've heard for our whole lives. You're too lazy, or you can't be bothered, or, you know, you're you're not capable of that, oh, you know, I, I've had awful things said to me over the years. I think we need to move forwards and see things differently and challenge those stereotypes that that people trot out. And I do. And as a social worker, my values are that I have to challenge stereotypes, oppression, stigma, discriminatory attitudes. And I've always stood up for myself, and just as well really.

Chris: 31:39

Do find or have you found whether through sort of online communities and stories or even people, you know, people being quite quick to self diagnose, rather than actually sort of get expert diagnosis is that something that's been an issue at all or not.

Margaret: 31:54

So I don't, I don't see it as an issue, because the way you get a diagnosis is actually often through self identifying, and I go, 'Okay, I want to do something about this'. And I want to understand more, and actually, quite a, you know, one of the main reasons for getting a diagnosis, but definitely not the only one is to perhaps access medication that may help. So that mostly tries to increase your dopamine levels for a few hours a day. For me, I'd still say doesn't even bring me up to the level playing field to which most people are probably functioning at. I think it's really important. And if we realised that though, neurodivergent brains are one in five, it is a lot more common, not just ADHD, but autism, dyslexia, dyspraxia, ADHD, there are a lot more common than we really recognise. So I don't, I don't have a problem with that. I think the more people know and understand about themselves, the better that is for all of us, and then more that they can be supported to reach their potential, and to not struggle with those things. So recent research out of Bath University's talked about, actually ADHD is have an even higher mental health risks than autistic people. Why is nobody taking any notice? Nobody's realising the, you know, the impact of living with living with those kinds of brains. So there's negatives. But there are, you know, we've talked about the strengths and the positives. And there are a lot of entrepreneurs, a lot of artists, a lot of creative people are just people who see things differently and like to, like to go about and make changes for the better. And I think often it's not recognised by professionals, whether it's social care, or, or medical professionals. So that's why people do self diagnose. And the waiting lists are now really, really, now that we're slightly shedding some of the stigma and shame because we are talking about more, so more people are able to say,' okay, that might be me' and it's about 76% inheritable. So if you look at yourself, and your parents or your grandparents or your siblings, you're likely to see it. And likewise, so my youngest son is ADHD, and then I have a parent who is undiagnosed.

Claire : 34:36

You're talking to somebody who's just got a late diagnosis in life - is this something that you would want to tell them that you wished you'd known a bit earlier on?

Margaret: 34:44

Well, the thing I'd want to say is welcome. Congratulations, you are you and you are not alone. And I think those things are really important, you know, welcome to, we use the phrase 'tribe, now, quite a lot, don't we? But welcome to your tribe. There's plenty of us around. So it's about how we help each other in those hard journeys, isn't it, which makes the load lighter to carry makes us feel less isolated, more supported, then we're more able to kind of fulfil our potential that has been wasted.

Claire : 35:17

If somebody sat there thinking, you know, I think this, this probably is me, but they want something, they want a proper diagnosis, it works. It's on paper so that other professionals can see see, it's there, which can sometimes be very helpful, because, you know, sometimes there are conditions they think that somebody thinks they might have, but actually, it might be something slightly different, which gives them even more understanding.

Margaret: 35:36

And there's a lot of overlap.

Claire : 35:37

So there are things people can go and do, and they can get this diagnosis. Is that going to a GP? Is that your first port of call?

Margaret: 35:44

Yes, it is. I mean, some people do go privately if they can afford it, there is right to choose, there are screening tools that you can do to help you understand more about what ADHD is, and isn't, and that that's quite helpful. And then you would go to your GP, unfortunately, there are very long waiting lists, because services have been behind the curve with ADHD for a very long time, both in children's services and adults. And as we know, all public sector, their backs are against the wall at the moment. So it is awful really because people are really struggling suffering, losing employment, out of education, or you know, totally underperforming because of the lack of understanding reasonable adjustments, access to medication, it's very hard to get any support beyond the medication. There's, there's very little, so you're you know, you're like jumping off a cliff edge once you get the diagnosis, really, because you can often wait a long time to get the medication. And then really, there's nothing even though we've got to learn, we need to find out about new strategies, but taking on new information can actually be really overwhelming. And it needs to be ADHD specific rather than 'Oh, have you tried a notebook? Have you tried to calendar?' 'Well, I forget to look at the calendar, I look at it, and I don't even see what's written on there, and then I'll forget again'. You know, it's, it's all those things that so people don't understand. So you need people who do really, really understand and who actually is great if another ADHDer who has those skills can support somebody else to help them. But one size never fits all, because we are wonderfully unique, aren't we?

Claire : 37:36

And there's it's such an easy thing to comment on. It's like the lady we had on who had dementia. She says she forgets things, and people say'Oh, I forget things all the time' or with hormone stuff, people are like 'well, I get, we all get bad days, we all feel a bit down', you know, there's always those comments that people make that just sort of belittle what you're going through and make you question it sometimes if you're not in the right place, it makes you start to question your own kind of sanity.

Margaret: 37:58

Yeah, so it's very dismissive and very, is quite really invalidating, actually, because it's, it's a huge struggle to get to that point. You know, often it is very effortful to achieve things, and people will be working a lot harder, though some of those strengths, you know, some things can really, really easily. But a lot of things, you do have to work out a lot more. And I think one of the good thing, I think about getting a diagnosis, but you don't actually need a diagnosis, is that ADHD is protected under The Equalities Act, it's a protected characteristic. So legally, reasonable adjustments need to be made in school, schools don't always realise that or don't always do those things. And employers as well as access to services and things that is really important. So you know, the law actually protects us and recognises some of those struggles.

Chris: 38:54

You've recently mentioned a couple of times in your answers with with a clear heart for being able to draw attention to or raise awareness and use the words to give others hope. What about yourself? What about this? Or if you don't, what gives you hope? What do you hope for what do you hope in?

Margaret: 39:11

I hope in who I am made to be. That's a constant process to accept yourself, I think when the struggles are hidden, and they're quite hard to express, and you have had quite a lot of, you know, self esteem struggles and finding those things very hard. But there's this process of constantly being reminded of, it's okay, you're not failing, you're not a failing human being at all you are, who you are, and making a difference to other people's lives that really motivates me. And so I have hope in my community of people that I, you know, share experiences with. I've set up a group, because I bring my faith into this as well, as an article that people will be able to read. And I set up a small group for us to explore faith and the intersection between that and those differences that people might experience and how we relate; perhaps it's really hard to find time to pray every day or to read the Bible every day in a set standard routine way. So just being with other people, I think gives me hope, and building communities that make a difference.

Chris: 40:30

Which leads us on to the question for you personally, to pass on something to somebody else - what's your Herman?

Margaret: 40:38

My Herman is that we were created to be unique. We are each and unfinished masterpiece, but a masterpiece. Nonetheless, we can all hang in the great art gallery of the world, alongside each other.

Claire : 41:02

Such affirming words, we are all a unique masterpiece, we're also all a work in progress. After we finished recording, Margaret was talking to us about the importance of realising that it's not about what we can do, or what we can't do or what job we do, but rather who we are in humanity. And so often to understand that it's curiosity and compassion that are the key not just for ourselves, but also for each other.

Chris: 41:26

If you need to learn more about ADHD as a diagnosis, then download Claire's previous Let's Chat episode with psychiatrist Ned Hallowell, who's an expert in the field. To find out more about Margaret, she's on social media, you can find her on Facebook and Twitter, and we'll put links in the show notes.

Claire : 41:40

And if you don't have a clue what a Herman is, then you need to check out the www.thesilentwhy.com/herman immediately. And you can also find more information about us on the website as well.

Chris: 41:49

Or visit @thesilentwhypod on pretty much most social media platforms, or check out the links in the show notes. We can also support the podcast by buying Claire fancy tea on www.buymeacoffee.com/thesilentwhy

Claire : 42:01

We're finishing this episode with a favourite quote of Margaret's from the very famous book - 'The boy the mole, the fox and the horse' by Charlie Mackesy."What is your best discovery?" asked the mole. "That I'm enough as I am", said the boy.