In this episode, Cassandra and Marcia are joined by Jeannie Di Bon, a movement therapist, educator, author, and founder of The Zebra Club. Jeannie Di Bon developed the Integral Movement Method, an evidence-based approach that integrates rehab, Pilates and nervous system regulation to help people move with less pain, as well as more control and confidence.
Listen to Episode 4 here:
https://sites.libsyn.com/589485/episode-4-movement-therapy-and-support-aids-with-jeannie-di-bon
Transcript Episode 4
Cassandra
You’re listening to the EDS Unplugged podcast brought to you by Chronic Pain Partners, a non profit supporting the Ehlers-Danlos Syndrome community.
Marcia
Welcome back to EDS Unplugged. I’m Marcia Brock.
Cassandra
And I’m Cassandra A Campbell.
Marcia
Hi listeners, we’re back with a special guest, Jeannie de Bon.
Cassandra
Jeannie is a movement therapist specialising in hypermobility, Ehlers-Danlos Syndrome, and also lives with hypermobile EDS and other related conditions. Hi Jeannie, thanks for joining us.
Jeannie
Hi there, thank you so much for inviting me. It’s brilliant to be here.
Cassandra
You’re welcome.
Marcia
Thank you. Jeannie, can you take us back to the beginning, please? Share your journey of living with hypermobile EDS and how you got into specialising in hypermobility and Ehlers-Danlos Syndrome as a movement therapist?
Jeannie
Yes, well, like many people probably listening, I had a very long journey to actually discover that I was living with EDS. So my symptoms started when I was around 12, and I was diagnosed with IBS, and I had headaches, and I started to get joint pain and general chronic pain. And then as I grew up, I just learned to live with these symptoms. I thought it was normal that everyone had all these different issues. And then I had two children, and things got a lot worse. And it was after having children that I finally went to get some help because I’d lost a lot of sensation in my left arm because it was so hypermobile. And this person told me, well, you’ve got no stability, you’re hanging off your joints. It was a physiotherapist, and he said, you need to go and do something, you need to do something like Pilates. And I’d never done Pilates at that point, so this was back in 2007, so a long time ago. I’ve been doing this a long time. And that’s how I got started really into movement, through taking some Pilates classes and then realising pretty quickly that I really loved it.
Jeannie
And I thought, I want to train and I want to do this. So I was really doing it for myself initially. But when I qualified, you know, initially as a Pilates teacher, I met another physio who worked with hypermobile people, and she started sending me her hypermobile patients who happened to have this condition called EDS. Which I’d never heard of back then. So we’re probably talking about 2010, 2011, and I started researching it and I was like, this is fascinating, you know, that there’s a condition that impacts every part of a person’s body. But, you know, I was just intrigued by it, so I just started working with more and more patients and it kind of evolved from there. I really truly believe that you’re sent the patients and the clients that you’re meant to work with because I obviously rehabbed myself, but I learned so much from those clients. But as I say, it wasn’t until 2017, I kind of suspected I probably had EDS and other things because every time I met a new client, I was like, gosh, I have all of those things as well. Could it be that I have this?
Jeannie
And then in 2017, I became very unwell with what I now know as Mast Cell Activation Syndrome and getting help for the mast cells. Luckily for me, the consultant also was an EDS specialist. And he said to me, have you ever heard of something called EDS? And he did obviously the clinical test, and he diagnosed me then with hypermobile EDS. So I wasn’t really looking for my EDS diagnosis. I was trying to get help for my mast cells, which had made me very unwell. I was really tearful, and I cried when I got that diagnosis because it kind of made a lot of sense of everything that had gone on in my life. You know, it was a 35-year journey to get that answer, but, you know, I’d already been working with the population for a long, long time by then. So it’s, it’s strange really how the universe kind of works. So that’s how I ended up doing what I do.
Cassandra
So it’s interesting because a lot of the time what I find is people have their diagnosis, they know what’s wrong with them, and then they decide, okay, let me work for the community. But this was the other way around. So it’s really interesting.
Jeannie
I think, you know, one of the reasons I could really connect with the patients— I mean, people always say, oh, you, you understand the way you explain things, it really makes sense to me. And probably the reason I’m so good at doing that and communicating at that level just through movement is I’ve been there myself. So all the things I saw these patients doing, it’s like, I’ve done that. That’s what I used to do. So I can communicate the watch points and how we need to do things because I really feel it in my own body. So I can then communicate it to other people. I think it helps an awful lot. Certainly for me, it helps me an awful lot.
Marcia
There’s a part where you focus on awareness-based movement. Can you divulge a bit more in that, please?
Jeannie
Yeah, totally. And that’s a huge part of what I do. I talk about having these 3 S’s: safety, stability, and then strength. And I firmly believe, and that’s the foundation of my Integral Movement Method, the IMM, the problem in the past that we had— and you’ve probably all heard or experienced it yourself— that people have had bad exercise experiences. They’ve had bad maybe physiotherapy or Pilates or yoga, whatever it might be. And the thing is, in the past, and sadly still today, what’s happening is, oh, you’re hypermobile, you need to get stronger. Do some exercise, get stronger, everything will be fine. And that is not true. That is not the case for the majority of people. That is not the case because unless you work on nervous system regulation first, we’re a population of people who have been dismissed, gaslit, all of those types of things, trauma. But we’re also a community that lives with instability within our own body. Yeah. So we’re finding ways of bracing and guarding and holding ourselves in a certain way to try and find stability. Now, if you come to see me, and I was like this myself, which is how I kind of figured it out, and I’ve got my shoulders up to my ears and I don’t breathe properly, how on earth am I going to do some strength training when I’m in such a state like that and I’m anxious about my health and I don’t know what’s going on?
Jeannie
There’s so many reasons why we can’t jump into strength training. Strength training is great. I’m not against it, but it has to come at the right time. So let’s do some awareness. We know that people lack proprioceptive awareness with this condition. So let’s do some breathwork, some relaxation, some proprioceptive work, and then we can start thinking about stability and ultimately strength. So you kind of need the whole package, but I just found that unless the nervous system is on board with what we’re going to be doing, it’s going to be very difficult for someone to progress because they’re going to be guarding, they’re going to be bracing, they’re going to be anxious. So yeah, I think it’s really, really important that we start with that awareness first.
Cassandra
It’s really interesting you say that because I’d noticed a while back that I brace and I hold, and even when I might be laying back on cushions and supporting my head and my neck, I’m not relaxing into the cushion. And it’s something that I noticed that I do. And I even the other day when I was at the osteopath, I mentioned this to her. She said, you need to ask Jeannie Di Bon when you interview her (chuckle). Because I think, I don’t know, you tell me, you just said it’s something that you’ve done and that you’re clients do. And, you know, I’ve become more aware of it, but it’s like it’s still happening. And then that whole thing of, yes, I’m doing strengthening exercises, but like you’re saying, and it’s just making so much sense to me, if I’m tensing, which I am much more conscious of now— I wasn’t conscious of maybe even a year ago— how am I then going to do this strengthening stuff without injuring myself, feeling pain that I didn’t necessarily need to be feeling, So yeah, that’s really interesting for me personally because I know that that’s something that I do.
Cassandra
Yeah, I’m really trying to be more conscious
Jeannie
Yeah, super common.
Marcia
I have been doing yoga for decades, 30-odd years, and I say I do my own version because following those flows was injuring me. And I enjoy yoga, became a yoga teacher 15 or so years ago, and it was last year or the year before I realised I’m not just doing yoga, I’m actively hypnotising myself. The breathing and like trying to focus and go to certain points of my body and focus and remove the pain because it’s just there all the time. And the breathing part of it— Cassandra talked about her breathing last year to me. I have reminders on my phone all the time. “Marcia, remember to breathe properly. Remember to breathe properly”. Literally, I have it like, remember to breathe properly. Breathing is the easiest thing in the world. However, breathing properly isn’t.
Cassandra
Yeah, absolutely. And the breathing thing, you know, I’ve been going to respiratory physio.
Jeannie
Oh yes.
Cassandra
Because my breathing has just been off. And what they’re saying is, you know, years and years of trauma to the body. And that’s also impacting my sternum.
Jeannie
Oh yeah.
Cassandra
And then impacting the shoulders and the neck. So like you were saying, Marcia, I’ve actually got a breathing app to remind me how to breathe. The way that this all connects.
Jeannie
Yes
Cassandra
There’s a lot.
Marcia
What is the biggest misconception that clinicians still have about hypermobility and hypermobile EDS? I’m seeing that people are separating the two, and I’m like, um, I don’t think they need to be separated. Over the last 3 decades, there seems to be numerous ways that they changed the name of it, and I’m like, if you’re talking about 10 years ago diagnosis, it’s not the same as this year, and in another year’s time they’re looking to change it again. So yeah, I’ve been diagnosed since I was in my 20s, so I’ve noticed a pattern of every 10 years it changes to something else, another name.
Jeannie
Joint Hypermobility Syndrome was the old, and then it went to EDS 3.
Marcia
Yeah, and then it went to hEDS now, and I’m like, okay.
Jeannie
Yeah, we’ve got hypermobile EDS and you’ve got hypermobility Spectrum Disorder. And you’re quite right, at the end of this year, so in December, there will be big, big announcement coming from the EDS Society about their new classifications. Because what we found over the years, obviously these criteria came out in 2017, but what we’ve realised now is that there was all these issues that people with HSD were maybe not treated in the same way as people with hEDS. When in fact I’ve got patients with HSD who are just as sick and unwell as people with hEDS. So what they’re saying now is, and what’s likely to come out, is that it’s a big spectrum. Yeah, so they are one in the same, but they’re on a spectrum. That’s one train of thought that is going around at the moment.
Marcia
EDS already has 13 different variants, and then to break it up even more…my daughter had a PIP appeal yesterday. One of the judges there was like, oh, you have hypermobility, not Ehlers-Danlos Syndrome. And I was like, it is actually hEDS. And there was a little bit of back and forth. I was like, does this woman not know that they’re together?
Jeannie
There’s still so much lack of education, unfortunately, despite all the work and, you know, you guys doing your podcasts and you know, we’ve got YouTube channels and Instagram and I educate people and therapists and teachers and physios. But sadly there is still so much lack of information out there. You have people out there being dismissed because they don’t score high on the Beighton score. That is just an initial starting point. You should not be using the Beighton score to diagnose people because it does not take into account, A, all the joints in the body, and it does not take into account the multi-systemic nature of these conditions. So there is still a lot of— absolutely, I hear it all the time. You’re just hypermobile. So, so what? Well, actually, symptomatic hypermobility— you can have asymptomatic hypermobility. Some people are just hypermobile, right? And that’s fine, and they don’t have any problems with it at all. But when it becomes symptomatic, then we have to start saying, well, is there something else going on here? Is there more of a connective tissue disorder going on here? Yeah. And a lot of people don’t get that, unfortunately.
Cassandra
Yeah, I think they’ve really muddied the waters there. You know, I’m at the point where I just don’t even try to even figure it out. For me, like you’re saying, it’s all the same thing. It’s on the spectrum and it’s just about where you are on the spectrum.
Jeannie
Yeah, and it’s about each individual person. You know, when a person comes to see me, it’s not like, oh, you’re hEDS, so I’m going to treat you this way, or you’re HSD, I’m going to treat you that way. It doesn’t matter to me. It’s like, this person’s in pain. They need help, they have things going on. What can I do to help them? Doesn’t matter to me what the label is. What can I do to help you? Yeah, whatever it is.
Marcia
My daughter’s 25 now, and I’ve kind of dismissed the fact that we have anything, and we just learn how to manipulate our joints back in because she absolutely hated hospitals. She recently had acupuncture because her shoulders are so tense and tight all the time. Yeah, because it was stuff mummy used to say to do, like doing some yoga, she kind of went the opposite way. And now she’s like, oh, I looked at your book again, Mum, I might listen to you a bit more (all laugh).
Cassandra
Our children could be like that, can’t they? You tell them something, they don’t want to hear it, and then maybe somebody else will say it, and then all of a sudden it’s like you never said anything, now they want to take notice. Yeah, my son’s like that.
Jeannie
Yeah, yeah, I do this for a job. I do know a little bit about movement, but my boys are like, nah.
Marcia
Um, do any of your children have EDS or hypermobility?
Jeannie
My little, my young, I say little, he’s, you know, nearly 20, but yeah. We haven’t had him diagnosed, but he’s definitely got hypermobility and he’s showing signs of things that I kind of experienced at his age. The older one, absolutely not. It’s weird, isn’t it? So I’ve got one who’s the exact opposite and then one who’s probably inherited things from me.
Marcia
Okay.
Cassandra
When you have clients who are newly diagnosed and feeling a little bit overwhelmed.
Jeannie
Yes.
Cassandra
Where would you say that they should realistically start in regards to movement? Because I even know for myself, for many, many years I used to exercise and, you know, I’d have flare-ups and whatevernot, but I’d take a break and then I get back onto it, aqua aerobics and the gym, etc. But the last few years I’ve found it much more difficult. I’ve had a few injuries – and I’m not somebody who’s newly diagnosed – but I’ve definitely been feeling overwhelmed in regards to I’ve got so many different areas that I now need to work on.
Jeannie
Yes.
Cassandra
It becomes really overwhelming. So for someone like me or for somebody who is newly diagnosed. What would you suggest?
Jeannie
It’s very common, again what you’re saying, and it is overwhelming right? Because we’ve got all this new information and sadly a lot of the information you’re given at time of diagnosis is not very helpful. You know, there’s nothing we can do for you. You know, it’s only going to get worse. Things like that. It’s terrible what gets said. I always talk about helping people find their baseline. So if you’re coming to me and you’re like, oh, I’m always getting injured, or I just don’t know where to start because everything I try goes wrong, which happens a lot. What’s your baseline? So we always start with breath and relaxation. They’re the first two principles of my Integral Movement Method anyway. So I’m coming to that nervous system regulation. Doesn’t matter where you are in your journey. I start with the nervous system regulation. And then it’s like, well, what’s your baseline? How many repetitions of something, however low that is, can you do today without causing a flare-up? Now, for a lot of my patients, that’s 1 or 2 repetitions. And that’s fine because it’s much nicer and healthier for your nervous system to go, right? I’ve done 2 repetitions and I don’t feel any pain and I don’t feel exhausted.
Jeannie
I didn’t have a flare-up. And I was able to do 2 repetitions every day for a week. Now in your brain, that is a huge win. It’s like, wow, exercise is actually starting to feel a bit safer. I can do that. Yeah. So we build from there. So everyone’s different. Some people can obviously tolerate more than other people, but we have to establish that because if I said to you, okay, let’s start you off, go home and do 10 reps 3 times a day. And you’d come back the next week and say, oh, ‘Gosh, I tried to do it, but it was really hard and it caused me a lot of pain.’ Now, I wouldn’t know at what level you hit your tolerance level, right? Because I gave you a lot of reps. I gave you 30 reps to do. That’s a lot. But if I say to you, ‘Try 2, see how you get on with 2,’ and you come back and say, ‘It was fine, it actually, it was easy,’ brilliant. Okay, let’s try and go up to 4. And we kind of build it up. My motto is go low, go slow.
Jeannie
So we start very low and we go very slow and we build from there. So it might take longer for people, but it’s actually much more sustainable. Yeah.
Cassandra
And that makes a lot of sense because generally when I’ve seen physios and whatnot in the past, and it is always that thing about repetition.
Jeannie
Yeah. Yeah.
Cassandra
And then that can be really sort of disheartening if you’re not able to do all of these reps and then it sort of takes you back to square one and then you sort of think, well, what’s the point? And that whole concept of pushing through.
Jeannie
Yeah. No, I know.
Cassandra
And, you know, I’m really thankful for the osteopaths that I have now because they’re like, no, no pushing pushing through. When you start to feel pain or too much discomfort, you stop.
Jeannie
Yeah, yeah.
Cassandra
You know, and that’s been helpful for me. But I think the whole society in general, when it comes to exercise, they just talk about pushing through.
Marcia
Absolutely not. Yeah, when I do the yoga classes, I only do them on retreats now. I’m getting people to learn to listen to their bodies, and I have to continuously tell people, if it starts to feel uncomfortable, don’t overdo it. Just learn to listen to your body. I learned to listen to my body, and I can remember telling my rheumatologist, and he looked at me dead in my eyes like, if everybody learned to do that, Marc, I’ll be out of a job. That has stuck with me ever since.
Cassandra
That’s the truth though.
Marcia
If we all did, because yeah, obviously they’re an expert, you’re going to them to ask them their opinion. But there’s numerous things over the years where I’ve realised I’ve actually learned to listen to myself and gone to the doctor when I’m feeling something because I have listened, they’ve suggested something and I’ve got a second opinion because their suggestion is wrong, because it is just a suggestion at the end of the day. I’m finding that we need these kind of safe spaces.
Marcia
So I know that you have— is it a Zebra Club?
Jeannie
Yes, the Zebra Club. Absolutely. Yeah.
Marcia
Can you tell me more about the Zebra Club and how it’s going, please?
Jeannie
Yeah, thank you. The Zebra Club is really my heart’s work. I established it in 2019 and it became an app in 2021, and we’ve just upgraded again with some new technology. So the Zebra Club is basically an ecosystem. A bit like you, I’m very passionate about helping people manage and find support. So the Zebra Club is basically a platform and we built on 3 pillars: movement, obviously it’s a huge part of what I do, education, so empowering people with the knowledge, right? So I have experts coming in every month where we have live events on Zoom. And community. So community is a huge part of the Zebra Club as well. But the Zebra Club is also used in some parts of the NHS. You know, it’s endorsed by doctors around the world. And we really do see transformations in the Zebra Club because the classes are tailored specifically for hypermobility. They’re short. They’re as short or as long as you want them to be. There’s none of this pushing through and we have categories. So say today you’re feeling a bit tired. We have fatigue classes, or maybe the next day you’re feeling a little bit stronger.
Jeannie
So we have stability classes. We have pain management classes. Because I live with this myself, I’ve basically thought, can I think of everything that an EDS body needs? And I’ve tried to record that. and it’s gone into the Zebra Club. So we’re a global community. I’ve got people all over the world, which is wonderful. So yeah, it’s, um, it’s going very, very well. And, uh, yeah, the Zebra Club, www.thezebra.club.
Cassandra
So how does it work? Is it a monthly membership that people sign up to and then they can access some different sessions?
Jeannie
Yeah. So as soon as you sign up, obviously you’ve got immediate access. We offer monthly, quarterly, annual, and we also offer lifetime membership. it’s a one-off fee rather than paying for a subscription. So it is a subscription, but we’ve really tried to keep it affordable and accessible for people. I try and keep the costs as low as I can. It’s obviously evolved an awful lot since 2019. It has morphed into something very different now, and it’s really a place for patients. We were talking about safety. Patients come on there and say, this is where I feel safe because it’s trusted information. So I’m super proud of it. I’m super proud of all the community members in there. And yeah, the changes, having people do stuff at home, the convenience of it as well, the safety of it, knowing that this is tailored for EDS. This isn’t just random fitness information. This is very specific. And I should say that the Zebra Club is backed by evidence.
Jeannie
So we’ve now published two papers on the Integral Movement Method, which is my method, which is obviously what’s inside the Zebra Club. And we know now it is scientifically researched, and I don’t think there’s any other platform or programme out there that has evidence base behind it.
Marcia
It always fascinates me, what was the trial sizes with the evidence?
Jeannie
So we actually did the study in 2018, and I did it with— some people might know Dr. Jane Simmons, who’s based in the UK, and who’s a physical therapist in the United States. My initial hypermobile online programme was called Strengthen Your Hypermobile Core, and that was 5 lessons. It was my first ever one. I think it was the first ever online hypermobility movement programme, and that was back in 2017. The initial study was we gave this programme to people and said, can you do this 3 times a week for 8 weeks? And then we monitored them, and then we also monitored them 6 months later, which is— in research, it’s very hard to get a long-term follow-up. Normally it’s like 3 weeks or whatever.
So initially we had a huge sign-up. We had 670 people sign up for the programme. But of course, as with most research, people drop out along the way. The people who actually did the 8 weeks and we got the 6-month follow-up for was about 200. So it’s still a fairly decent number, especially considering our population and how pain, fatigue, illness, things like that can interfere with research.
We’ve published a qualitative study, which obviously shares how people felt about doing this online Pilates programme based on My Movement Method. And then, on the 16th of February, we had the quantitative paper published. So we’ve actually got the statistics now, which were all statistically significant, which means, you know, they were important in terms of improvements for a number of patient outcomes. So really, really exciting. And we’ve kind of talked about this. One of the key things that came out of it was one of the scores, which was something about your physical activity score. Everything else went up or down in terms of kinesiophobia, things like that, fear of movement, etc. This one didn’t go up. And what this shows us is that people saw massive improvements, but it wasn’t about doing more. It wasn’t about doing more physical activity. We were talking about that earlier, you know, go and get strong and do exercise. It was about moving differently. So it wasn’t that people had to go and run around the park 5 times and lift some weights. They actually had to move differently with more body awareness, which is what we were talking about at the beginning of this interview.
So I think that’s really important that they felt so much better. And I think it’s really reassuring as well, because often we think, oh my God, I feel really deconditioned. How am I going to get fit? You know, they keep telling me I’ve got to get strong and fit. We proved with this research that it wasn’t about doing more. It was probably about, apart from moving differently, I’m going to say listening to your body. Yeah, really being aware. How am I actually moving? How does this feel? You know, the go low, go slow approach. So I think that’s really, really exciting in terms of movement for our population, that it doesn’t have to be daunting. We don’t have to go to the gym 7 days a week in order to improve. I think that’s really brilliant news.
Cassandra
Yeah, I think that’s really big news actually, because it is reassuring and it does help people to feel less like, oh, I’m not doing enough.
Jeannie
Exactly. Because we’re always told you haven’t done enough, you’re lazy. Why didn’t you do your exercises? And we know from other research that one of the reasons people stop exercising with EDS is because they were given inappropriate exercises to do in the first place, and then they felt unachievable, or maybe they hurt themselves, or it was demotivating. So really important, right?
Cassandra
So there can also be a fear element as well. Fear of injury, fear of flare-ups. All of those things combined. Something that I never had before up until a couple of years ago, this fear of, oh, I’m going to cause a flare-up, oh, I’m going to cause an injury. I never used to feel like that. I used to go to the gym and do weights and I’ve started doing those things again. But in the back of my mind, I was constantly battling with, I know I need to do these exercises, but I don’t want to do them because I don’t want to have a flare-up and I’ve got things to do.
Jeannie
Yeah. You know, that’s normal, right? There is another research paper actually, as you mentioned that, that talks about how people with EDS have to, like you’re talking about, they actually have to weigh this up. If I do X, what’s going to be the consequence, yeah, of Y and Z? Is X worth getting Y or Z? And they’ve actually researched that, and there is a whole thought process that we go through to decide, am I going to do this activity, whatever it is? Should I go to the gym? Should I go to the theatre with my friends? Should I go for a walk? Whatever it is, we actually have to go, well, hold on a minute. Is that feasible for me right now? I’m in a flare-up. Is it a good idea for me to go shopping with my friends? Probably not. And that’s something that we go through every single day. And I don’t think people appreciate that.
Cassandra
They really don’t.
Marcia
Because I know, all right Marcia, you need to look at everything that you need to do because any new activity or new extra thing that I might have to do that day then has to counteract what I can’t then do. So I have to live by that, otherwise massive crashes. And I feel like with EDSers, having that education on what we have to do for just everyday survival…how important do you think it is for patients? How do you get patients to know that they now have to do that for themselves?
Jeannie
Yeah, well, that’s where education is a huge part, and that’s a huge part of what I do. So educating through the Zebra Club, but also educating therapists so they can pass this on. Obviously pacing, learning about pacing is really important, and there’s some really good therapists out there who are real experts in how to help people pace and adapt their lifestyles. I think that’s really huge. And I think, you know, we’ve already mentioned it before, you know, learning to listen to your body. You know, I was like that. It was like, oh, I’ll just do a little bit more. I’ve got a bit more work to do. I’ll just push through. I’ll do this little bit more. And then I would crash and I’d feel dreadful. And now I’ve actually had to learn the hard way, is that actually try and learn before it gets to that stage where you feel absolutely dreadful. You’ve got a headache. You’re exhausted. I have to stop before I get to that stage. And it’s for everyone, I guess, learning, well, when is my stopping point? Because once it’s gone too far, it’s much harder to climb back up again, right?
But if I stopped an hour earlier than when I should, I’m going to be able to manage my symptoms a lot better. And the other thing I learned to do is build rest into my day. So every afternoon I go and have a little nap, or I have a lie down, and I don’t feel guilty about it anymore. I used to feel guilty. Now it’s like, no, I need it, and this is what I’m going to do.
Cassandra
Yeah, as you were talking, Jeannie, I was thinking about— because I used to coach people who live with EDS and other chronic pain illnesses – one of the main focuses was pacing. Again, I had to learn that for myself. One of the biggest struggles that my clients had was not feeling guilty about not doing the dishes or the hoovering or whatever it is for the children and things like that. So I used to have a lot of those kind of conversations with clients and learning how to pace, how to balance out your day, how to not feel guilty about resting or napping or whatever it might be. Because that’s really, really important. Because I think, and especially as women— I can’t speak for men— we’re so hard on ourselves.
Jeannie
Yeah.
Cassandra
And then when you have children as well, we’ve got to be these perfect parents. And that whole thing of also, obviously our children are a priority, but we also have to prioritise ourselves, because if we’re not good our children are not good. So finding that balance where you don’t feel guilty because maybe they are sitting down on the computer game for an hour while you have a nap.
Jeannie
Absolutely.
Cassandra
It’s okay. It’s not like they’re on there all day, but if that’s what you need to do to have a little bit of downtime, quiet time…or find something else for them to do, don’t feel guilty about it. Because if you’re burnt out, stressed out, exhausted, having a flare-up, you’re less use to them anyway. Finding that balance and pacing is just really, really important.
Jeannie
Yeah, balance is huge. Balance is actually the fifth principle of my IMM method. And I’m not just talking about balance as in physical balance, being able to stand on one leg. I talk about balance being that emotional balance that you’ve just talked about. With this condition, that was the other issue.
People would address this as just a physical condition. You’ve got hypermobility, go exercise. Well, what about the psychological, the emotional side of this condition that nobody is taking into account? So emotional balance, absolutely. How do I look after myself so that I can be a good mum, a good wife, a good partner, whatever?
Cassandra
Yeah. And that self-care is top of the list. Absolutely.
Jeannie
And self-compassion. Self-compassion is huge, right? We don’t do enough of that, I don’t think, because we’re always so hard on ourselves.
Marcia
Yeah, I must say I have mastered that because I used to really try and fit everything in. Cassandra knows, she’s very, very proud.
Cassandra
I am. She used to frustrate me so much because she was just trying to do so much, and I’m just like, take a breath, take a breath.
Marcia
I’m trying to cram. I used to work 4 days a week, and it went down to 3, and that transition from 4 to 3 just had so many spillovers, it was ridiculous. And then to say, I actually can’t do it. And now my transition is going down from 3 to 2 days. I need these other days off. My health lets me know I need them. So yeah, I still do my cram from 9 till 9, but there’s a lot of gaps. There’s a lot of sitting down and relaxing and breathing in calmly. There’s naps in them.
Jeannie
Very important. It’ll look different for everyone, right? However they’re going to manage it. A lot of people out there do work full-time. They have to, right? And how do they manage? How can they manage their pacing and make sure they’re taking care of themselves? It’s really tough, I think.
Cassandra
Talking about self-care and compassion, let’s talk about medical aids and supports. Now, in my experience, there are many clinicians that are against the use of aids such as braces and support equipment, because they say that it can stop you using your muscles etc. Whereas personally, I’ve found them very helpful when used at the right time for the right periods of time in moderation.
Jeannie
Yes.
Cassandra
What is your take on using aids?
Jeannie
Well, I’m in total agreement with you on that. You know, I’ve heard that. “Don’t use braces, don’t use this because it’s going to make you weaker”. I don’t know where that comes from, but it’s not true. If people need support, they need braces, they need walking aids, whatever they need, they’re going to be more functional. They’re going to be able to do more with that support, right? So they’re also going to feel better about themselves. We were just talking about this whole emotional side to this condition. So why would we not want to help people if they need support? Why would we not want to help them? So absolutely, if people need supports, braces, ring splints, whatever it is, definitely use them. My only caveat is that I think that if we’re going to use them, we shouldn’t use those as a substitute for doing the movement work, because a lot of my Zebra Club members and patients wear their braces while they’re doing their exercise. And it actually enables them to do the exercises. So I do think we don’t want to rely on them as passive things. We still need to do the work, whatever the work looks like for you.
But if you need help doing the work, or when you’re not doing the work and you’re out and about in real life, absolutely use whatever you need to use. There’s no guilt about any of that.
Cassandra
I think also – when we’re talking about the emotions that are attached – because I know for me, when I was much younger, and didn’t have a diagnosis, things like…I still don’t like using my crutches now, more just because of the discomfort and the awkwardness sometimes. If I’m out shopping, how am I going to carry anything? You know, that kind of thing. But there is an emotional part to that. What I found when I was much younger is that it makes me feel vulnerable. It made me feel weak. I didn’t want to be conspicuous. And then you’ve got the people like, oh, what happened to you? Oh, did you sprain your ankle? And sometimes it was just much easier to say, yeah, because you can say, oh no, I’ve got EDS, and they’re like, huh? So there was a big thing around that in regards to feeling vulnerable. I can understand how people who maybe will avoid using a wheelchair or any kind of aid because of the emotional impact, you know, how it makes them feel about themselves and being strong and powering through and all of that.
Cassandra
So I would imagine you’ve got some people in your community that feel the same.
Jeannie
Yeah, absolutely. As you say, especially maybe the younger people. We were talking about hormones and how hormones impact people, and a lot of my clients are late teenage, young adult females who have been impacted by these sort of hormonal changes going through adolescence into adulthood. A lot of them, understandably, don’t want to use things or have things. They want to go out and be with their friends and do all the normal things that young people want to do. I totally understand that. So you modify it around your lifestyle. Can you wear them when you’re at home? And as well as doing a bit of exercises, the stability work, things like that, so that maybe when you go out you don’t have to wear them. You know, everyone’s going to be different, of course. It’s a very emotional thing, isn’t it? And as you say, it makes you feel quite vulnerable. I think.
Marcia
Do you recommend people to wear aids at all?
Jeannie
I don’t wear them myself, and it’s not like I have any of the brands or anything that I personally recommend to people. But yeah, I’d say if people need them, absolutely find something that works for you, whatever it is. Ring splints are really, really popular. I’m just thinking of the Zebra Club members. Ring splints, SI belts, very, very important for a lot of our members. A lot of people struggle around that area. You know, you’ve got obviously knee braces, ankle braces, you know, ankle braces can be so helpful for people who struggle with walking. They help stabilise the whole foot and ankle structure. It can change someone’s life, right? So absolutely, why would we not advocate for that if it’s going to help somebody, right?
Marcia
Yeah, definitely. I had a lycra garment made for me by the University College London. I had tried for decades with different shoulder straps because my shoulders were the biggest instabilities and my hips. And I would be going mad, literally in pain all the time because of my shoulders. And when they made that Lycra garment, I could breathe again. I could have my children hold my hand walking down the road without it sliding out and slipping out at every given moment because, you know, children will swing your hands when they’re walking. Those things were massive to me but so little to maybe somebody else. But I wanted to be able to hold my children’s hand.
We hold each other’s hands now. They’re 24 and 16, and I’m like, “I love holding your hand”, because I was really limited when they were younger. Yeah, I think certain braces, lycra garments, and some items that you may need. One of my friends recently got a body brace, and she was like, “oh my God, this feels wonderful”.
Jeannie
The Body Braid is a really good one. A lot of people have that.
Marcia
Yes, that’s it.
Jeannie
I think it’s quite challenging to get into, but I think people are like, “wow, this is amazing. I feel like I’m connected. I’m held together”. So yeah, there’s lots of things out there. Posture t-shirts, compression leggings. There’s so much out there. So yeah, depending on what people need, we often do on the Zebra Club a Christmas gift guide. We ask our members, what are you using at the moment? And I post it on Instagram and also on my website. So there’s often a lot of suggestions of different braces and garments on there.
Marcia
Do you do anything with the EDS UK charity?
Jeannie
Yes, I do. I’ve done a whole series of webinars for them actually, and they actually in 2022— a long time ago now— awarded me their community champion. So I’ve got it on my wall here.
Cassandra
I remember that.
Jeannie
Yeah, so nice. I’ve done a lot of things for them.
Marcia
All right, plug that again please. The 14th of March, did you say?
Jeannie
14th of March. EDS UK. You can sign up on their website. A Pain in the Hypermobile Neck, if anyone’s got neck problems.
Cassandra
Yes, me!
Marcia
Cassandra’s the one. I’ve only had a neck flare-up once, I’m happy to say, and I empathise with Cassandra so much because the amount of pain— you realise how heavy your head is, you realise how much breathing hurts, turning your eyeballs while your neck is flaring up is painful, you know, like, yeah, yeah, yeah, yeah.
Cassandra
And even the slightest movement, and I think that’s what people obviously don’t understand if they’re not living with these conditions. A lot of the time I could just be doing a stretch and my neck’s locked. The most simplest of movements, you know. So we are constantly— well, I speak for myself, constantly, all day, every day, having to monitor our movements. And it’s a lot. And I’m not always remembering, oh, don’t stretch yet, so the smallest thing could just— yeah, it is a lot.
Marcia
Going back to what you said, the constant having to monitor how we’re living and how we’re doing things. It’s just moving your actual body! I’ve done a pain diary once for one week and realised that I literally was dislocating or subluxating around 20 times for the week. And I said, never again. I don’t even want to realise that’s how much it was. I feel like I’ve doubled it this week, but I’ve never gone back to writing a diary where I actively know how much it happened each day.
Jeannie
Yeah, some people don’t want to write a diary. It makes sense, right? If we’re that hyper-focused on it and we’re writing it all down, it can actually make us more anxious. Because we’re like, oh my God, I had no idea. So I totally understand why some people just don’t want to do it.
Marcia
Definitely. I’ve never gone back to doing it again.
Marcia
For people navigating both pain and fear of movement, what’s the first small win you try and help them achieve?
Jeannie
Obviously pain is a huge part of living with this condition. And then we were talking earlier about fear of movement as well. Also a huge part. When I start with people, the first thing I do with them is small amounts, right? So we lie on the bed and I give you some gentle breathwork to do, and that’s all we do, and that’s your homework. Pretty much, you know, we can all go and lie, hopefully in bed or on the floor or on the sofa, and just start to connect with our bodies, start to feel the breath, start to feel the weight of our own body. I think that’s great.
I had one client once who was in her 60s when she came to see me, and she was very much what we were talking about at the beginning, this bracing. She was very tight in her rib cage, didn’t breathe very well, obviously, because she was so tight and she had a lot of pain. And all we did – we obviously had a good talk because listening and hearing people is a big part of the healing process – but we did breathwork.
So we lay on the table, we did some breathwork. She went home. She came back the next week and she said, I feel so different. And she said, “for the first time in my life, I feel like I’ve been given permission to relax”. Now, this is a woman in her 60’s, and she’s only just felt like she can relax. I mean, it was heartbreaking in a way, but totally life-changing for her. And now she’s taken the go low, go slow approach, and she’s amazing. She’s doing all sorts of things. She’s got a whole exercise programme that she does every single day. Absolutely brilliant. So breathwork and relaxation work are nice wins for people when they’re starting from a lower base.
Cassandra
Yeah, that makes sense. We spoke earlier on about incorporating pacing and napping into your daily life. Is there anything else that you incorporate that makes a really big difference?
Jeannie
Movement. I move every day, however small. You know, on a fatigue day, it might just be a few pelvic tilts or a few side-to-side hip rolls, but I move every single day, and I can’t emphasise enough how important movement is as part of someone’s management of this condition. I might just go for a walk, a short walk, some days. It would look different for everyone, but movement is definitely part of my daily activities. If it wasn’t for movement and that physio all those years ago telling me “you need to go and do some Pilates”, I honestly don’t know where I’d be today because I had so little body awareness. I had so much pain. I didn’t understand my body. I didn’t even know what he meant when he said you’ve got no stability. I mean, it was awful. If you saw me then and the way I held myself and my posture and how I would slump, totally different person. So movement totally changed my life. Movement is a huge part of my day as is napping. As we said, resting, just laying on the sofa sometimes, closing my eyes. Pacing is a big part of it.
And you know, the most important thing is learning to say no, because I was always a yes, yes, I’ll do that, I’ll do that, I’ll do that, and pile it all up. So saying no to people and no, I can’t do that. That’s been a huge benefit.
Cassandra
I think something that’s really important that you mentioned just now… even doing something as small as some pelvic tilts, even while you’re laying in bed, because I find sometimes that I’m just not in the— whether it’s a time thing or a headspace thing— to do a an actual exercise routine.
Usually before I get out of bed in the morning, I do my little bit of movement, a bit of mobility. I do it most mornings, but it’s not always possible. So for me sometimes, yes, just doing a little bit of pelvic tilts in the bed, a little bit of bridging in the bed, while I’m brushing my teeth, I’ll do sideways squats.
So I might not have that day where I’m gonna do a workout or something for half an hour, watch a Jeannie Di Bon video for 20 minutes. That might not fit into my day necessarily, but just doing certain things, even on the days when I’m having a flare-up. Okay, I might be flared up in my neck, but maybe I can do something with my knees or do some pelvic tilts in the bed, something like that, just to have a little bit of movement.
Because I know that that day maybe I’m not going to be going out anywhere or doing much. So I think a really important thing for people to understand is that it doesn’t have to be a whole workout routine. It doesn’t have to be set reps. It’s just movement.
Jeannie
Yeah, we call them movement snacks. What you’ve just described are movement snacks. So while I’m brushing my teeth, I might do some heel raises.
Cassandra
Me too.
Jeannie
Roll my shoulders a few times. Might do whatever. Little bits, like you say, absolutely very important message. You don’t have to go and do a class if you haven’t got time, you haven’t got energy, you haven’t got the mental focus. Movement snacks, pelvic tilts in bed, whatever. Brilliant. We can build movement into our day.
Marcia
I do bed yoga because sometimes I can’t do it anywhere else. So yeah, definitely any way you can.
Cassandra
Absolutely. What would you say to someone listening right now who feels defeated by their body?
Jeannie
And that’s really common. You’re not alone in feeling that way. We live with these really complex conditions and they kind of throw things at you and sometimes we just feel very overwhelmed by it all. So I think the message is, you’re definitely not alone. There are people who get this, who understand this, who are there to support you. There are communities. There are charities. There’s lots of information out there now. And I think the really important thing is to remember that it doesn’t matter where you are today. I’ve always said this; it doesn’t matter how you feel, how deconditioned you feel, if you haven’t exercised for a long time, whatever it might be, there’s always something we can do. I’m a great believer in that. It doesn’t matter where you are, we can always do something. Remember that go low, go slow approach. And really, really taking small steps. You know, this isn’t a sprint. We’re in a marathon here, and we’re going to have to take those little steps to get something that’s really sustainable for us. So please don’t give up hope. I think that’s really important. Don’t give up hope. You’re not alone, and there is always something we can do, however small that is.
Cassandra
Wonderful. Thank you, Jeannie.
Jeannie
My pleasure.
Cassandra
Is there anything else you’d like to share with us, Jeannie, before we let you go?
Jeannie
Well, thank you both so much for inviting me. I’ve really enjoyed chatting with you. And, you know, just a final message— we covered an awful lot in this episode, but a final message to the patients and your listeners, is just to remember that you are the expert of your body and nobody knows how you’re feeling better than you. So don’t ever be afraid if something doesn’t feel right for you. Someone’s giving you exercises to do, it doesn’t feel right, it’s making you feel worse, it’s increasing your pain, don’t be afraid to advocate for yourself because you are the expert of you, not somebody else. I hope that’s helpful.
Cassandra
Fantastic. Thank you so, so much for sharing your time with us and our audience. Of course, we’re going to have all of your links on our show notes on the website, but if there’s any links that you haven’t shared yet that you’d like to share, feel free to do so now.
Jeannie
Yes, just a couple. I think I didn’t mention my free YouTube channel, which is called the Hypermobility Channel, and we’ve got over 300 videos and talks on there. So you can subscribe and have access to all of that. And also, if you’re looking for reading resources, my website, jeanniedibon.com has a lot of blogs on there on a wide variety of topics.
Jeannie
If you’re thinking of going to see a doctor and you need extra information, print some of those blogs out and take them with you and say, look, I’m like this, this is what’s going on for me. It can be really, really helpful. So yeah, jeanniedibon.com for any sort of blogs and other information.
Cassandra
Brilliant. Thank you so, so, so much. Right, we’re going to let you go and get on with the rest of your day.
Jeannie
Thank you so much for having me.
Cassandra
Thank you. Take care. Bye.
Jeannie
Bye-bye.
Cassandra
Thank you for tuning into the EDS Unplugged podcast. Don’t forget to subscribe and share.
Marcia
Until the next time, stay informed, stay inspired and stay plugged in. You have been listening to EDS Unplugged, brought to you by Chronic Pain Partners.
April, 2026
