The Invisible Link: Hypermobility and Neurodivergence

What happens when our bodies and brains are more connected than medicine has led us to believe? In this illuminating conversation, Jane Green MBE, founder and chair of SEDS Connective, unpacks the profound yet often overlooked connection between hypermobility and neurodivergence.

After decades of being dismissed as "dim and a hypochondriac," Jane discovered that her physical symptoms and neurodevelopmental differences weren't separate issues but deeply interconnected aspects of her experience. This realization led her to establish SEDS Connective in 2018, now a global charity bringing together conditions that have traditionally been treated in isolation. "For centuries we haven't had a diagnosis," Jane explains, highlighting how the fragmentation of healthcare has left countless people feeling invalidated and misunderstood.

The conversation reveals how common it is for people with autism, ADHD, dyspraxia, and other neurodivergent conditions to also experience hypermobility, chronic pain, gastrointestinal issues, and fatigue. Yet medical systems continue to treat these as unrelated conditions, sending patients to different specialists who rarely communicate with each other. This siloed approach not only fails patients but costs healthcare systems billions in unnecessary treatments and appointments.

Jane's community-led approach at SEDS Connective brings together people with lived experience, medical professionals, and researchers to advocate for more holistic understanding and treatment. Though she acknowledges facing significant resistance – "I feel daggers going into me" – from some in the medical establishment who resist connecting physical and neurodevelopmental conditions, progress is being made through research, conferences, and persistent advocacy.

Discover how this groundbreaking work is validating experiences long dismissed as imaginary and learn how you can connect with SEDS Connective's resources if you've experienced these interconnected conditions. Whether you're struggling with unexplained symptoms or supporting someone who is, this episode offers a new framework for understanding the complex relationship between our bodies and brains.

Chapters

• 0:00 Welcome to Jane Green MBE
• 2:05 Founding SEDS Connective
• 4:56 Breaking Medical Silos
• 8:20 Medical Backlash Against Diagnosis
• 15:14 Community-Led Health Advocacy
• 19:55 Access to Reliable Health Information
• 22:55 The Unrecognized Value of Carers
• 24:35 Finding SEDS Connective Online

Transcript

Speaker 1: 0:01

Hello and welcome to Access Chat. I'm delighted that we're joined today by Jane Green MBE, who is the founder and chair of SEDS Connective, the former charity on hypermobility and neurodivergence. And if that sounds like a strange combination, actually it's not, because there's a huge amount across our world and I'm going to use a term comorbidity I'll probably be told off for talking about morbidity, but because it's negative but actually there's a large amount of crossover and co-occurrence of of conditions such as hypermobility in your amongst the neurodivergent community. So welcome to access chat. Jane, please tell us a little bit more about the work that you're doing and the other strings that you have to your bow, because I know that in the chat we just had leading up to coming on air, you mentioned a whole bunch of other stuff that you're doing yes, uh, thank you so much.

Speaker 2: 0:58

Well, just to put it briefly, I'm not an, I am an. I was an educationalist, I was practicing, I became an assistant head teacher, but I had to give all that up and medically retire and I'm lucky to be alive because it was that serious. But actually I left school at 16, just two basic, what were O levels, then grade C, which is the lowest you could get. So I spent about 30, 40 years thinking I was really dim. Well, I was told I was dim and a hypochondriac. Then I started SIDS Connective in 2018. We're now, as you said, the global charity for this and I have sat on various boards, as a non-executive director for social Care, education and currently the UK representative of the European Federation of Neurological Associations Community Advisory Board. Member.

Speaker 1: 1:55

It does mean that is quite a lot of strings. So tell us a little bit more about SEDS Connective and the work that you do. As I mentioned, there is a crossover with these conditions, but many people may not really understand what that link is, and yeah.

Speaker 2: 2:13

So I worked in neurodivergence educationally and I've got two children and myself, of course, but they were always separated. So you'd have the autistic, so you'd have the autistic children there, you'd have the ADHD children, there you'd have the dyspraxic or dyslexic, and you'd all have different supports and structures put in place and never could they be joined together and I always saw something missing. So after I retired, I wanted to do something. I was burnt out, but I thought I'm either going to grumble, I'm going to do something about it. But all the organizations I saw were always separate still. So it would be the physical health ones, like the chronic fatigue or exhaustion ones, or the pain ones, and everything was separate and the same with neurodivergence. So I was looking for something, but it wasn't there.

Speaker 2: 3:01

So I had to start this, and it was about giving belief, because this is the whole crux of it we've had centuries of non-belief that our health issues are actually real, because often they're invisible, aren't they not always? But they're still disbelieved. And so I could see a way forward to what helped me I knew would help others and I could get funds. Way forward to what helped me I knew would help others and I could get funds in locally, just in three towns or villages near me, was the idea A good idea? Never have a good idea, you never know when it's going to stop and it just grew because this is what the members needed and so we did activities that we knew we would trust, because often trust and trauma has gone on a lot before.

Speaker 2: 3:48

But also making policy change is really key for us and making transformational change for the future, and so it's all over all our lives, we're all generations, and years, years, we've got all sorts of people in um, from medical to educational every profession, because they're affected or they're carers and so on and so forth. So, um, and I write articles and and, uh, published authors, so things like that as well, and we do webinars and we've just arranged the biggest conference with others in July at the Royal Society of Medicine on post-COVID symptoms, which you might think is strange but actually were really familiar to us Hypermobility and neurodivergence. So it's the first unique conference to put that together. Yeah, yeah, a lot.

Speaker 3: 4:44

So go on antenna one of the reasons why we started access chat was because we felt that there was many conversations online about different topics of disability and people. There was no communication between the different groups. Everyone was working in their own way and we see that there's a big value on people being more aware of each other and collaborating more. And that leads me to a personal story. My wife has chronic pain and when she was at Nagel she found a doctor who understood her well and sadly that daughter passed away and she struggled to find a new doctor because everyone else that she would go they would be very dismissive about her condition. She finally found one that she trusts because they might have learned something that might not be up to date to current evolution of society and make sure that they don't miss the diagnosis or they don't dismiss women when they tell about their condition.

Speaker 2: 5:56

Yeah, the hysterical, neurotic women. For centuries have been around, haven't they? It still happens, but you can't blame doctors because they aren't trained in it. Sadly, they used to refer to a rheumatologist, so a second in the line, but that's all changed. They've stopped that now, so it's going back to doctors, all these new musculoskeletal hubs.

Speaker 2: 6:20

I think what has to happen is what we've been trying to do the community voice has to speak. I totally believe in joining up. It's not always easy because I think, I don't know, maybe people like to stick to their first original diagnosis. I've got about four diagnoses before my hypermobility ones, which I always wanted, had IBS, I had fibromyalgia, I had chronic fatigue syndrome and arthritis, but if you look at the whole umbrella you know that fits in quite well and, of course, pain, yeah. So I think it's about letting the community voice help lead. This would be key, and also getting the medical people into our charity, which we've done. So we're going to jointly work together because I think you're right, I think it's like it's not just one area, you've got to come in in different areas really. Yeah, and getting it out here on podcast helps absolutely.

Speaker 1: 7:22

I'm struck by how many neurodivergent people experience all of these other conditions but that, as you say, like everything is compartmentalized right and so we're not treating people as as a whole.

Speaker 1: 7:38

We're treating individual sets of symptoms rather than looking holistically at some of these things. So, like you, I've been through IBS and fatigue but not chronic and also various different diagnoses of neurodivergence, and when you start talking to people amongst our community, you realize just how commonplace it is and how fragmented that whole thing is, where you go to the doctor about one thing and they send you off to look at your stomach issues. So you go and have an endoscopy, but they don't connect that with any of the other issues, and I'm sure we've all experienced this over time. So I'm glad that you're taking this holistic approach and it's good to see that you've got the medical fields involved as well. I know Deborah's also got a question. But how are you finding and I'll shut up after this how are you finding people coming around to the idea of looking at these things holistically? Is it a bit of an uphill struggle?

Speaker 2: 8:47

I have faced so many barriers I didn't realize I was a bit, I suppose, I don't know. I just thought it makes sense to me even before I started Sense Connected because I'd looked at the data and I'd researched what would help me. It made so much sense I thought once I start doing it, everyone will believe me. I don't know why I thought that, but it made sense. And of course, that doesn't work, so I've learned to be patient. It takes 17 years to embed the science in, apparently in the public, and we are 11 years in. I was trying to make it quicker. I haven't got there quite so far as I thought it would happen like that, so I've forgotten your question so the question was about you know, do you?

Speaker 1: 9:36

do you see the sort of acceptance of addressing these multiple conditions holistically growing within the medical profession? And you say you're six years away from maybe that?

Speaker 2: 9:48

six or seven on that 17 year timeline well, I, I would like to think so.

Speaker 2: 9:53

I think there's been quite a divide. So so we get those who really love this, who think we're wonderful. Even when I do talks when I used to do talks for the largest organizations, it was on brief, it was on brand, it was all very neutral. Probably I feel daggers going into me, it's quite weird and merely nasty sort of stares. And then you get the other half who think you're down from some godland place giving them permission to live and almost worshipping you, and it's both ways. It's totally over emotional for me, but I have got used to that. I think, um, I think in belief, you because some people medical researchers maybe, have based their careers on it and so on don't want to change, but also I think they don't want to think the physical is joined up to the neurodevelopmental. I don't know what it is. It's maybe a fear, it is utterly quite bizarre, I suppose, in a way, when you're not aware of it. So again, in the medical field there's a divide. But we had the conference at the Royal Society of Medicine. I've done the Royal Science and the psychiatry ones who've actually mentioned a type EDS on their guidance for autistic, adhd and dyspraxic, dyslexic people. They've actually got EDS on there, so that's great, and the fact that we're on Versus Arthritis is one of the charities for this, so I think it's creeping up.

Speaker 2: 11:28

However, there's been a real, there's been a backlash. So 32 years ago, my eldest was diagnosed autistic ADHD and a learning disability in dyspraxia, and that was quite rare, you know, and certainly girls and women were rare. And then later on, the girls and women got diagnosed with autistic. And then ADHD is caught up, hasn't it? But there's been a real backlash against that. I see currently, and I think with hyper mobility, I have been told to my face some years ago, when I started this, by a doctor, a prominent one, that I'm getting this far too trendy and it's like it's not too trendy, it's um, it is what it. This is what happened. So for the centuries we haven't had a diagnosis. When I was young, there was no sense support in schools. That's why I left school early. So we're just getting over the hump. That's been the back, like a you know, you're going on the road, you've got a roadblock and now we're getting over it and so it's passing on. But there has been a backlash against the what they think is over diagnosis, but it's just that backlash. And they don't want the hypermobility legs. They think too many people are going for it. It seems to be anyway or getting too popular.

Speaker 2: 12:43

And without a diagnosis, okay, it might not have, like you said, everything involved, like you can't have one doctor overseeing it. You won't get a brilliant doctor can can do everything, that's for sure. But if you don't join up the ankle and knee together and that's happened to me, even bones you're not going to see the whole person. And ideally, I think the government needs to save money, don't they? So this would save money if they actually saw the whole person is what I think, both in education and health, because it would save a lot of time.

Speaker 2: 13:16

And if you don't have a label or diagnosis, especially if you're neurodivergent, I think sometimes you lose your self-worth, your value, sometimes, like your pain feels invalidated and you're making it up Like a hypochondriac. That's what I felt. I felt I can't be, because I've been told you can't have that. You know it's not normal. All the tests come back negative, of course, quite often, and so you think, and other people think, they're making it up because you rely on the doctors. So it's, it's a conundrum, but I hope by by our reputation is very good. We will continue to. In fact, our patron is the leading researcher in the world and she's got 13 papers on the go, pamela, so hopefully we'll get a lot more and some other people around the world too, doing studies and survey the largest one.

Speaker 4: 14:14

So it's all connecting and and yeah, Jane, I know that you also, when you're talking about this topic or talking about just to make sure the audience knows too you're talking about Tourette's syndrome, tics and EBSA different neurodivergent diagnosis but it was interesting as you were taught to me. It was interesting, as just now when you were talking only because women were never listened to by the medical profession. I believe that's shifting and changing, but often women were considered when they would talk about some of the problems that they had in the past we were hysterical and things like that. So women weren't listened to in the same way, and I think that really applies to what we're talking about here. But it also appears to me that this is and I don't want to. I might be incorrect, but this is a student-led effort. Are students involved with the work that you're doing? How are the members getting involved? To be heard and maybe I'm using the wrong word we're actually voluntary, we're all user-led, so it's a real community.

Speaker 2: 15:21

We empower our members to be volunteers. I mean, people ask me how I did this model. I don't know, I don't know, but people do. So we got I mean we've got six trustees, trustees, we've got nine advisors and about growing, 37 volunteers and and lots of odd supporters like once a year they'll come and do something and um, because I can't do everything and you know, as a founder you have to be, you have to sort of lead, but you know I probably would like a break sometime and to make it sustainable, you have to. So that's what we're doing and, yeah, so our members are all involved in this as much as they can be, bearing in mind illness.

Speaker 2: 16:09

It's quite a difficult model, bearing in mind illness physical and mental and caring, because we're often carers. You know, I'm a carer, I'm a sandwich carer for my mother and my eldest, who's an adult, all their life. So a lot of you know there's a lot of intergenerational trauma as well, because they've had it passed down. You know, not being believed, as you said, but interestingly we we do have a lot of men as well. They're not so well. They can be very seriously affected, but often not quite so much, so they won't get a formal diagnosis. That's changing in the next year or so, by the way. That might be easier. And of course, hormones make us more susceptible if you're women. But for the men, they do have symptoms, they just don't realize it, like the gastro issues or the migraine or the fatigue or strains. I'm at the gym again, but I've strained my ankle again. Have you got a headache? Do you get a headache? Oh, I do. How's your sleep? Because you know sleep is.

Speaker 4: 17:14

That's why, because of, I won't get into it too far, but the hypermobility affects every single system Right, and I think we're still learning to figure out what it means to truly be human. We've broken ourselves to little pieces and now we're trying to put ourselves back together. But, antonio, I know you have a question. Let me turn it over to you.

Speaker 3: 17:33

No, my question is about information, access to information. Rely on information because we know that we have, you know, social networks, people talking about all sorts of conditions across social networks, sometimes romanticizing their journey with entrepreneurship, not providing the right information to others. So how can we find ways where people can have access to reliable information, considering that sometimes they lost themselves in the addiction of the algorithm and they end up trapped in these social network narratives? How can we move away from that and make sure that people are really, really informed about their condition and ask for trusted help?

Speaker 2: 18:19

Well, that's a lot to ask. Actually, I was just having a conversation slightly about that before and of course, the algorithms have changed. Our name is different, I have to say when I started this, I should have started it with an A. I realize that now. And you know, when we talk about groups, I haven't got autism or ADHD in the name. It's Sense Connective, which a lot of people you know ask me what variant of hypermobility is that?

Speaker 2: 18:49

I think our reputation is getting out there, so we get tagged all the time now, which is lovely, can't always meet demand, which is something we're trying to look at carefully, and that's where we have to make collaborations, I think. But it is about collaborating really, because you can't do one thing on your own. To be honest, this is so wide it's even wider than I've already gone public about. It probably includes autoimmune conditions, probably includes connective tissue, which is what we're talking about, is probably involved in autoimmune conditions, so it could be absolutely huge and I think, as I said, health equity and health literacy is what you're talking about really. It's getting us educated about what it is and maybe what they've been told in other areas. That keeps them at a certain level, I would say, and I've seen that over the years when I was a carer, I identified as a carer when my child was very little, you know, because it was very, very full-time both of them, but particularly my eldest and but I wanted to do my.

Speaker 2: 20:01

I had to do more because I had to earn some money, because I didn't get benefits, didn't know how to do it then, and and it sort of worked out. But I saw a lot of people still identifying as a carer most of their life and and that meant they wouldn't let the one they were caring for, you know, get independence as much as they could. Because it is about that, isn't it? It's about education, it's about facilitating independent.

Speaker 2: 20:27

I've always been keen on that and I thought, well, I'm not going to label myself a carer forever, you know, and it's more than just one label. It's important, it's very important, and I'm not really important because we do, we don't get paid for it, but I think it is about health, literacy and working with policymakers to make that difference. So you have to go there as well, and of course, they don't have a lot of time and they're looking to save money generally and, of course, best outcomes, but this would be the best outcome. It might not seem it, but it is. I'm convinced of that. It saves so much money. I might be on my hobby horse a bit, so I think you're right though.

Speaker 1: 21:12

And we ought not to underestimate the impact and value of carers either. For example, in the UK alone, it's estimated that the total value of unpaid care to the economy was around £180 odd billion in 2021-22. And I should think that that's gone up since then because of, you know, long, covid, aging population, as you say, sandwich carers, etc. And by sandwich carers we mean people that are caring for the. They're in the generation between the youngsters that they're caring for and their parents. It's not that I care for sandwiches I do love bread with stuff in between, but it's not and I care for that greatly. Sandwich care is where you're doubling up on care, which is a pretty heavy lift. Yeah, so, and yeah, if people were paying external services for that, then it would cost 180 odd billion, and you know, if you think that's just the UK, so globally it's going to be worth trillions. So carers do contribute to society. It's just that that contribution isn't really valued.

Speaker 2: 22:30

No, and I think I mean I'm not saying all carers are no indifference, by any means at all, but definitely a high proportion of our members are carers. So it's like it's a sort of double jeopardy that you know we've got all these things we're doing, we are saving money. A lot of people think we can't work and well, we might lose work. I lost my job three times but we can do things. We've just got to be believed and have those adjustments and support and flexibility. I think is really really key Because, also being a carer, you know, I used to take days off on my holiday when I was working to care for my elders because I didn't you, you know we didn't have care days and my hospital physics actually, but um, yeah anyway.

Speaker 2: 23:19

So it's really really difficult and um, I just think we've got a lot of caring issues for ourselves and for our family members or friends and so on and um, and then doing a charity is caring in a way. I have a lot of them. We have a big inbox and um messages and we can't, you know, we can signpost, but I think going back to antonio's question is really good. Is is about getting the trust of everybody really that we are quite neutral as a charity, that we can be quite strong as well on what we think is right. I suppose, yeah, but we might not always be right, but I think we are.

Speaker 1: 24:07

I think no one is always right. I think that the way you gain the trust of the community is when you discover that you're wrong or there is new evidence that you accept that and are transparent about it. I think that transparency is key to maintaining trust. Where can people find you and SEDS Connected if they want to find out more about the work that you're doing?

Speaker 2: 24:35

if they want to find out more about the work that you're doing. We have a website which is wwwsedsconnective one word, I can spell it out, but I don't think I need to and we have a general email box, if that's easier, which is general, at sedsconnectiveorg. Then we have all those social media platforms We've still got one that some left only because we've just got them all going and so the usual ones, which are a Facebook page. We've got a private Facebook group, we have Instagram, we have got TikTok and we're going to get some younger people to manage that, thank goodness, which I have to oversee. But yes, and apparently we're going to Discord and other strange ones and Reddit, but I don't mean to upset those, it's not strange, I just haven't really got used to them yet. Then we have LinkedIn and X and Blue Sky sky, I think that's it that's a lot to manage.

Speaker 1: 25:40

We're big on social media, we spend a lot of time there and even I think we struggle sometimes to maintain them all. I think maybe, instead of saying strange, we should say unfamiliar um, I'm sorry about that I didn't mean to no.

Speaker 1: 25:55

No, that's okay. I think that I've used Discord. I've used it for gaming, but I know that people are using it for other communities. There's an accessibility community, for example. But trying to keep on top of all of them is a superhuman effort and especially if you're already fatigued, then we have to think about how we sort of apportion our efforts and so on so that we can sustain this for the long term. So please, you know, yes, got the youngsters doing the other channel.

Speaker 2: 26:28

Yeah, and we've got YouTube as well, but we wanted to do podcasts, but we're not as technical as other people, but we have done webinars and I am the host of Good People. I mean, I find it quite tricky at times, I have to say, because of the admin that goes around it, but we're trying to do more because I think it's quite important, but I don't often get around to talking, so it seems silly really. It might not seem like it because I'm talking all the time now, so I'll be quiet.

Speaker 1: 26:59

No, no, but we're happy to have been able to have you on yes, and so we're glad that you were able to come on our podcast. We need to actually thank Amazon for supporting us, keeping us on air and, as you say, people can find you on all of these different channels. So if you want to find out more about the interconnection between hypermobility and neurodivergent conditions, go and look for SES Connective. Thank you so much, jane Been, a real pleasure talking to you.

Speaker 2: 27:27

Thank you.