#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes

Episode Transcript
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Lucy Foulkes (00:05):
Do you know what it's like to try and live a life where you're only allowed medication on 10 days? That means you have to choose what days you're going to treat yourself. The pattern I've had with my pain my whole life is that it goes through a really bad period of a few months or a
few years in one specific place,and then it tends to move on, and then it will come back again to that area. Never had a treatment for it, and definitely not anything that worked. It's that willful disinterest it was treated or got better, but the pain stayed

Emily Kate Stephens (00:50):
Welcome to Make Visible, the podcast shining a light on complex chronic illness. I am your host, Emily Kate Stephens,
Welcome to this week's episode,and hello, Gez, how are you doing this week?

Gez Medinger (01:13):
Today I'm doing okay. Today I'm doing better than the last few days. So it's a big thumbs up for me. I had enough spoons to get haircuts and haircuts I hate because they have a high spoon cost, and you're just sitting there and I feel claustrophobic, and I'm aware my breathing is getting
shallow, and I don't know why Ihate it so much. Never used to, but, but, yeah, so that's a good sign. If I'm able to go and get a haircut, it's a good day.

It's quite interesting, though, because that is it. Do you think it's to do with the sort of sensory overlay?

In my case, I don't think so. I think during the whole covid period, I was paranoid about catching covid, yeah, breathing on your head. And I'd previously, in the pre covid era, I'd had a horrible flu, which I'd caught off a guy who was really ill who cut my hair. So I've had that primer
experience, and then just thatknowledge that you're in this confined space with someone for half an hour than breathing on you think, I think that's what's created the PTSD for me, which is why I now find them uncomfortable.

That is really, really interesting.

How is your back, Emily, I know you've been suffering with a little bit of pain for the last few weeks. How's it doing?

So I've started physio. I have gone back to exercise, which is for me, just joyful, gone back to yoga, and I'm navigating that careful balance between pain and fear, because I want to get back to moving, and I want to get back to doing my everyday things and working out what is actually

(02:37):
pain in my body that is tellingme to stop, and what is actually my mind making me want to protect it. It's such a balance. It's such a battle. And obviously that that plays into so much of what I've navigated for the last six years.

And I think so many of us have with complex chronic illness. It's that whole thing of I want to do this thing, but I'm scared of what happens if I do it, and it's too much.

Yeah, and overriding signals versus listening to your body, interpretation, understanding what is being told to you by the signs in your body,

And also not obsessing over the signs in your body, because then you just get caught in this negative feedback loop, which isn't doing your nervous system any good. So it's this impossible - having to juggle plates whilst riding a unicycle. That's kind of the sort of psychological challenge.

I love your analagies.

Yeah, that's kind of what you have to do, like the emotional and psychological, ludicrous dualities, existences we have to exist in at the same time. You can do this, but you can't do that, and you've got to do this, but you can't do that. It's almost impossible, really.

Yeah, so this week, we are bringing you an interview with Dr Lucy Foulkes, who has spent 23 years navigating some of those physical and mental challenges, as she has suffered from chronic pain for over 23 years, and Lucy Foulkes is an academic psychologist and a senior

(04:05):
research fellow at OxfordUniversity, author of two books, and her main focus is actually adolescent mental health and social development. And the reason that I wanted to talk to her is her personal story in terms of the way that our health is not viewed holistically, but has perspective at looking at
her illness through her personallens, as well as her academic insight I found absolutely fascinating. So here is the conversation with Dr Lucy Foulkes.

(04:40):
Your background is as apsychologist, and you do a huge amount of research around, particularly adolescent mental health and social development. A lot of the work that you have done academically, you've written a lot of papers looking at this disparity between people's understanding. Of what
they're experiencing medicalprofessionals ability to help people self diagnosis versus medical diagnosis. There's this huge disparity in it all, and that parallels a lot of what happens in complex chronic illness.

Yeah, so it's been really interesting that I've been experiencing both at the same time, so I'm studying it, researching it, particularly interested in mental health. But in the background, I've had my own undiagnosed thing, and then I got a diagnosis and understood the meaning and the power of
that. So I've had this personalexperience that's really relevant to my work.

So let us talk about your personal experience over the 23 years since your first appointment about it. But actually, if we could go back to even before that, from childhood, what it was like to live in your body?

So childhood was quite unremarkable. I don't really remember any experience of pain in childhood, apart from falling over sometimes. The only thing I remember about my body in childhood was that I was very bad at sport and very badly coordinated, which I now know is relevant to hypermobility, but
my body in childhood didn'treally cause me any problems.

When did you first start to experience symptoms or pain that you couldn't just explain as being something normal?

It all started to go wrong once I started my periods when I was 12, really painful periods, which eventually was acknowledged and treated as endometriosis. That started when I was 12. So that started a kind of problematic relationship with pain, because I became scared of the pain that
was going to come every month.And then when I was about 15, I started getting chronic muscle pain in my back. So that was the first experience of a chronic pain that didn't have a name and that didn't understand. And then from there, it was a gradual increase in pain arriving in more different parts of my body

(07:04):
and getting worse. Over, yeah,I'm 38 now, and so over, yeah, 23 years.

I think there is huge value in people who are happy to be open and to share about their personal experiences for our listeners to feel that they are not going through this alone. They are not the only ones who are experiencing this. And I think there are so many people who
psychologize these illnesses.There are so many people that try to normalize what people are going through. So our audience have fed back and said that they really, really value hearing what other people have gone through. I'm here to talk to you about your personal experience, what you have been through, and

(07:47):
perhaps strategies that havehelped you. One of your key takeaways with this the problem with our scientific system. It's something we address pretty much every single episode. There are loads of parts to it, and I think that's hugely, hugely important for you to be able to express and how none of it is
necessarily linear, and some ofyour symptoms make sense only once. Other symptoms are actually acknowledged and come into play. So talk me through.

When I was 18, studying for my A levels, I started getting very frequent headaches. It was a heat wave that summer, and it was sort of put down to stress and dehydration, but the headaches from then, from 18, never really went away. So the headaches have been a big part of my life.

Was that simply head pain? Or at that point, did you understand that that was actually the migraine cycles?

When I was about 25 or 26 doing my PhD, was the first time that the word migraine was used. But I think actually what I have is chronic migraine, and understanding that now helps me understand why no one quite knew what was going on, because it never really fitted me into the category of,
you know, my head was fine, andthen I had this distinct episode of a migraine attack, and then it cleared. My experience right when I was 18 was that there was this low level headache really frequently that would then escalate sometimes. So when I was about 25, 26 I started moving into the world of

(09:15):
migraine treatment. But itwasn't until I was 35 that a neurologist said this is chronic migraine, and that's something different. And then actually, the treatments that you've been doing to try and manage your migraines are contributing to medication overuse headache, which is this particularly cool
aspect of migraine.

Yeah, and this is a problem, isn't it? Obviously, you mentioned there that you're being treated by a neurologist, but this is also a problem with our medical system, the way that these things are treated. I got addicted essentially to opioids when I was early on in my migraine
journey because the GP just gavecodeine for the pain. A lot of the time we do need to try and understand what that pain cycle is about, rather than just trying to suppress the pain, because I ended up with that cycle of migraines getting worse from the treatment that I had been offered.

I was very similar. Took far too much codeine. And what is awful, I think, is when I've spoken to medical professionals about medication overuse headache, they're like, just take medication 10 days a month. That's how you solve it. And I'm like, Do you know what it's like
to try and live a life whereyou're only allowed medication on 10 days? Means you have to choose what days you're going to treat yourself and take a triptan. And you can't know in advance if I've had three days of migraines at the start of the month, should I take three days of medication, or do I need to

(10:43):
save those days for later on?And all that calculation is happening alongside the typical migraine attack advice, which is that you should take medication as soon as you feel a migraine attack coming on, and actually, the longer you leave it, the worse the attack will become. I've never really met a
professional who's understoodthe mental load and the psychological challenge of trying to make the decision of when you allow yourself to take migraine medication.

I understand that so well,

Isn't it awful? And it's the guilt and yeah, the challenge of trying, yeah, the guilt of when you cave and allow yourself to take one, and then the worry that it's going to come again,

Yeah, and that idea, and I think, that you have to do it with everything in your life. It's not only with your migraine attacks. And so many people experience this across these complex chronic illnesses - the idea that you have to ration your life and pick what is more important than
something else. What are youprepared to take medication to be able to do? And one of the really sad things with it is that a lot of the time it's the absolute essentials, like making it to the hospital appointments that take up that rationing rather than being able to focus on the things that you enjoy.

(12:06):
And I know that, and we can talkabout this later, I know that is one of the things that you have found really valuable, is to try and find the time and find the energy for doing the things that you enjoy.

Yeah.

So, yeah,

So that was the headache, migraine side of things. Then when I was 21 in my final year of university, my undergrad, I developed pain in my wrists, elbows, forearms, and I'm in a flare up of it at the moment, really painful to try and use your arms, basically, to write the user computer to cook.

(12:44):
And it happened when I needed todo my finals, and you have to hand write them three hours back to back. And they offered me to do it in a room on my own, but that didn't really make any any difference. That was really, really bad, and again, just no help available for it, and no linking it together with the

(13:07):
endometriosis or the otherthings

Can you describe that pain? You say that it's localized to the wrists and the elbows? Does it feel in the joints? Does it feel muscular?

I think it's more muscular. The muscles were extremely tender, like every trigger point on my arm feels like I desperately want to put an acupuncture needle in it or something. It feels really, really sensitive. But then I think now, the most recent physio that I've seen about it
understands, EDS has said theproblem is coming from the tendons. But that that was wasn't acknowledged.

What was the advice when you first started having these pains of how to treat it, or how to deal with it on a day to day basis, and you need your arms to do everything?

I think it was one of those things which has happened so many times, which is just that it's given a name which was repetitive strain injury and not really attached to any solution other than to rest. I think maybe I got some like wrist support. I did eventually see physio, but it
just eventually went away. Andthat's a pattern I've had with my pain my whole life, is that it goes through a really bad period of a few months or a few years in one specific place, and then it tends to move on, and then it will come back again to that area I had years and years in my 20s of the arm pain not

(14:29):
being a problem, but it's comeback again recently. Never had a treatment for it, and definitely not anything that worked.

Do you have any understanding now of why there's that cyclical nature of the pain moving around your body?

No, I don't. I've always tried to tell people about it, and no one's ever seemed hugely interested in it, as in telling professionals, I explain it to myself as though my whole body is on the edge of chronic pain. And sometimes I do one specific thing that will tip.. like I we use my laptop a
bit too much without all myspecial ergonomic setup, and then that would just tip it over the edge into being aggravated, and then it's that part of my body that's going to be angry for a few months. I've never really had a clear explanation. Is it just me? I really have no idea. It's been a defining

(15:14):
aspect of my picture, but I'venever really heard anyone else talk about it.

It's not something that I have experience of or have an explanation on at all, but I think it's a really, really interesting thing to highlight for others that might be going through it, because I think where all of us want to end up is in a system where each of these things is heard and
listened to as being relevant inyour overall health condition, rather than being dismissed as another thing that you have, another situation that you're taking to the doctor that is mildly inconvenient for them, because you have to live in your entire body every day, whether the pain is in your hands or

(15:57):
whether the pain is in yourhead, there is pain. And how do we address this, and how do we look at this holistically? I don't know how we get to a system that works like that.

And it's so obviously relevant, so obvious now that it wasn't just coincidence that started at university, that I had more back pain for a while, and then the migraines kicked off, and then in my late 20s, I made what I now know was a fatal mistake, which is that I trained to run a
10k it wasn't a runner, but Iwanted to do it, and I trained properly for it. And during the training, my body was okay, but almost the day after I ran the race, I developed pain in the soles of my feet and in my upper back, which felt that like it was in my spine, but I didn't understood that it's more

(16:46):
muscular and those two pains, Imean, it's hard to pick the worst pain or the most disabling, the foot pain, never got better. So that was about 10 years ago now, and both of them get much worse when I stand or I walk, which took a while to figure out, but I gradually learned that. And so now a huge

(17:08):
part of my life and thatplanning stuff you were talking about, what pain are you willing to endure for what benefit? It's about not being able to stand and walk, and how difficult it is to plan around that. Now that I know I have EDS and that I'm hypermobile, it was a terrible idea to run, but I just didn't
know at the time, and both theupper back pain and the foot pain has just baffled until I realized it was EDS.

The thing is, for each of these things, you have all the way along, sought help because it has been sufficiently bad that you needed medical help for each body part, each situation in your body.

And I think maybe what's more unusual about me, relative to so many people who suffer with this, is that I saw lots of private specialists. I was able to pay to see physios, to see podiatrists, to Google, the people who seemed like the best people who would understand it, consultant rheumatologist,

(18:08):
etc, massage, acupuncture,nutritionists, which was a whole big mess, trying to use food to understand what was happening. It wasn't through lack of trying, and it wasn't through lack of resources, and I still repeatedly came up against this kind of shrug or disinterest.

I would like to point our audience to a beautiful essay that you have written on your substack and posted on your social media that actually charts your journey. And there is one point that you describe trying to tell a doctor about a situation in another part of your body, and because

(18:47):
he's not a rheumatologist, hecompletely dismisses that as being something relevant to his specialty. And I think that really just highlights the way that all of these things are treated as their component parts, and the lack of holistic care or oversight through your condition, through your whole
experience of this shows thatdespite going to the best people, despite seeking all of those different specialists, you can't necessarily reach a diagnosis without looking at your body as a whole or get help unless you look at your body as a whole.

So that specific example was a neurologist who, three years ago, recognized that it was chronic migraine instead of migraine, and that was a real breakthrough. But I tried saying to him, and I really remember it distinctly, as we often do with these distressing appointments, I tried saying, I have chronic
pain everywhere else in my body,in case that's relevant. And he said, not a rheumatologist. It's that willful disinterest to me now it's like, is that not a useful piece of information? And I've had that so many and even if they're not actively preventing you from doing it, it would seem crazy in the current

(19:56):
medical system if I go to aurologist about bladder pain. Pain, which I did, and I told her, I have migraine. It would seem like, Why the hell are you bringing that up? And yet, now I know the problem that I have leads to both those outcomes.

Can we talk about that? Because you had recurring bladder pain for years, but you did not have a diagnosed UTI or any specific thing that was being picked up. I do think that there is potentially a problem on a lot of our UTI testing in that they can only see the thing that
they're looking for in the waythat our tests are run, but that that is not necessarily the case in in your situation. Talk to me about that bladder pain, because it's one of those things that is a little bit taboo still, with so many of these things. People don't want to talk about that openly, but it's something that

(20:43):
so many women are going throughevery single day, and you just have to live with it.

And it's certainly true with gynecological pain as well. It's got that added element of it's really difficult, like everything else is, but you also can't say to your colleagues, but that's why I can't attend the meeting or whatever, but the bladder pain was quite contained for maybe 18
months or two years, a few yearsago, thank God. I mean, I live in fear of it coming back again, but I did have a UTI that was very clearly a UTI. It was treated. It got better, but the pain stayed. And I think that seems to be a pattern in my body. And maybe it's a common EDS thing that there is a real

(21:23):
injury or infection or problem,but then once the primary problem goes away, the body or the nervous system holds on to the experience of pain. I had this sort of echo of a UTI the pain and the urgency and the discomfort. But I had a scan as well as the UTI tests, and it was always just like, good news,
it's healthy, which obviouslyisn't good news when you want to know what's going on.

Absolutely. And I think that that is echoed across multiple of these conditions, that there is that initial bacterial, viral trauma hit, hormonal hit, there is a change that happens in your body that is very real and very chemical, and then subsequently, and this, again, is still very

(22:06):
real and very chemical, theneurology holds onto it and doesn't release what was going on. Like your body does not know that it has passed, or your brain does not understand that it is past.

Yeah, and that it's safe. Suspect probably is that it's continuing to interpret as a threat and trying to tell you that there's a problem there to pay attention to, because the system is over reactive and hyper sensitive. What did help there? I don't know if it just gradually got
better, but at least part ofwhat helped was seeing pelvic floor physio right, learning to relax the pelvic floor muscles, which have also helped me with other pelvic pain, but also really basic training stuff about try not to go for we wait two hours in between. Because actually, if you go more

(22:54):
frequently than that, then youcan kind of encourage this sort of overactive bladder. So that was a bit of behavioral training with her. And so those two things helped eventually calm it down. But I do not trust my body. I live in fear of that coming back, the other things coming back, new things
happening. So I'm just, I'mgrateful that I'm not in a phase of it at the moment, because it's horrible and you can't talk about it.

I don't want to say that it's shameful, because, of course, it's not. But there's something, particularly in the workplace or the or at school that is seen as strange to talk about these things. I think we are getting better as female society at sharing these things, sharing
discussion around periods,around the menopause, around gynecological issues, around neurological issues, but we're in our social media silos or our friendship silos. That's not necessarily a reflective of the whole of society. You still can't necessarily tell your male boss that you've got this.

That's what I was going to say. The trouble is, when you have to tell men about it or women at work that you don't have a close relationship with, because it is private. It's private and personal. And you might not necessarily want all sorts of people in your life to think about that aspect of
your body. And that's a problemwith talking about any of the pain stuff is you have to repeatedly share private information about yourself. Even, I think if we get over the shame bit, you have to repeatedly give up a personal part of yourself that you might not want that person to know

(24:24):
about. It's really hard.

Yeah, in terms of your journey and your trajectory through having to suffer any one of these things repeatedly over years, is horrific, but once they're all led on top of each other, and you're having to choose which to treat, to a degree, your your diagnosis, which we will sort of

(24:45):
get on onto is a fascinatingone, but I think that each of these issues is often taken or given to people as a diagnosis in itself. So people you're told that you have a skin condition. It's x, y and z. You're told that you have MCAS, you're told that you have IBS. They're all labels that are given to things

(25:09):
that possibly need to step backand to be taken as part of the bigger picture.

And I did get various words along the way, but really they were all part of a bigger whole, and I didn't have that umbrella explanation. So the skin problem is, in my 20s, I developed chronic itching in my skin that lasted for about seven or eight years. And tried to get help for that, and no one

(25:36):
really understood again, no oneknew what was going on. And that then got better, but it came back again after I had COVID, and I didn't make the link to covid Until I subsequently got the EDS diagnosis, and she said covid has triggered symptoms in people. So yeah, it became itching, but also flushing,

Right. And is that through your whole body?

Just my face itching? Yeah, all over. I've definitely improved that with treatment and medication. So yeah, again, by that point, I was like, Are you kidding? Like, because as far as I knew, then there was no proper explanation that they were linked. So it just seemed like, is it really
the case that I have all thesedifferent things, and most of the women around me that I can see don't have anything wrong, and it was so frustrating to not have an explanation, and so frustrating to not have a word to communicate to other people, because It even sounds a bit silly, but you've got another

(26:32):
thing when you're trying toconvey it to other people. That's that. And then lastly, I think lastly, is the digestive stuff, which appeared after covid, which has never been as problematic as all the other things but bloating, cramping, digestive difficulties that have been really uncomfortable. So
yeah, I think that takes us upto now.

Even before you started having digestive issues. One of the big things you did to try and address multiple of these things, was, look at what you were eating. Look at your nutrition. I believe that you have for a long time tried to follow low histamine diets, or had certain
things completely cut from yourdiet. Tell me about that idea of what you were trying to do with that, and how effective some of that has been for you.

I think anyone who's had long term health problems that aren't solved with medicine as a practice will look into nutrition. It's this incredibly popular idea at the moment that you can eat yourself healthy, and that if you cut out a specific thing, you can read all this information. I cut out
dairy and my migrainesdisappeared, and then you eat that and you think, God, maybe that's it. Maybe in all these years, that's the one thing I needed to do. But the trouble is, so I see multiple different nutritionists, and as you may well know, they give you this extensive list of rules of

(27:55):
things to eat and drink and noteat and not drink. And also they recommend all these supplements, which are incredibly expensive, and yet again, you feel like, what if that's the one thing would be crazy to not try it, but then you've got this madness of trying to draw a relationship between what you've consumed and
what your symptoms are. So Ifound if I did have a migraine, I would be trying to figure out what I'd done wrong to have triggered it is like, okay, is that the thing I ate this morning, or is it the thing I ate yesterday that's triggered some information that's now caused this? And then you've got

(28:29):
that where you're trying tocontrol and track everything whilst also trying to exist in the real world, where socialize, or you're at someone else's house, or it's Christmas, or you're on the move, and all you can buy is what is in a train station. So then you have to kind of break all the rules
anyway. I have learned certainthings which have been really helpful, diet wise, for me, but I've found the process miserable, and that's the joy from life, exactly. So you're already miserable, and you know those things that make you happy? Don't do any of those. I actually had an experience

(28:58):
really recently where I saw adoctor, and had to fill in some forms in advance, including a bit of information about my diet. And she was looking at my forms, and she's very interested in histamine. She said, Is it true that you have three or four cups of tea or coffee a day? And I said, Yes, knowing that I'm
going to get in trouble for it.

So awful that idea that you're going to get in trouble!

I know, but what? But then she said, You're poisoning yourself four times a day. I cried in the appointment. It's it was a particularly bad time, health wise. And I love caffeine. I love the effect it has on me, and it was the one thing I had allowed myself to do, even though it was breaking
the rules.

This is the problem with having such a multifaceted condition, because for me, with a migraine brain, you're told X, Y and Z, I need the caffeine when I'm going into that migraine cycle. Is it a vasodilator or vasoconstrictor? Whichever it does, it helps me.

Helps

at certain times.

And actually, caffeine is paired with some painkillers.

Yeah, you go for triptan and an aspirin. I always do the trip turn with with the Alka Selter

Anadin Extra?

Yeah, Alka Seltzer or Anadin Extra, which are paracetamol, aspirin and caffeine combined. And I can great sometimes stave off migraine without the triptan, if I do that.

I've definitely found Anadin Extra has been very helpful. Yeah, same with you. Like, sometimes that can be enough, but yeah. Also caffeine, the caffeine affects people really differently, but it has a massive impact on my mood in a good way, and my concentration levels and my focus. I feel like
I genuinely would not be able todo the job, but I do without it.

So you cried in the appointment, but you didn't necessarily stop.

No, I've got a cup of coffee here. I felt like you can take everything away from me except that. And I said that to her I have in the past, which is useful for me now, I gave up caffeine for a year, and it didn't help. I just felt tired and miserable. So I've got that kind of evidence that that's not
a particular trigger for me.Plus, I've never had a sort of temporal connection where I have caffeine and then something happens in my body. So I've put those things together, and I've made the decision that I'm going to allow to have that.

And that is about listening to your body and doing a little bit of what gives you joy.

Yeah, but that word poisoning, I think that's going to go up in the list of some of the worst things that a doctor has said to me, because people with chronic health problems, well, me, certainly carry around an enormous amount of guilt about the idea of what I do or don't do causing it,
because it's true, right? Likethe things you do do make a difference. So it's very difficult to not become obsessive with feeling guilty when...

That was clear in the way that you also just described, the way that you review what you've done the day before a migraine hits a few moments ago. It's almost like you're trying to find you're absolutely trying to find a trigger point. But it's a blame game to yourself, whereas it's
not your fault. You've got amigraineous brain. That is a neurological condition. And yes, there are trigger points, but there is this very, very weighted way of looking at things, of what did I do that caused this each time you go through the cycles? The same with exercise, the same with I

(32:17):
worked at my computer too long.The way that we speak to ourselves can be so, so detrimental to our perception of ourselves and how we're making things worse.

And I think it's an attempt to help yourself. I think because I'm trying to be like, What can I avoid next time so this doesn't happen again? Don't have some Yeah, exactly. I remember having a migraine attack recently, and talking to my partner and saying, it must have been because this, this is,
and saying, I don't think youhave as much control of them as you think, in a helpful way. I think they just happen sometimes, and I think you sort of need to repeatedly tell yourself that take reasonable steps based on the information you've been given and what you've learned about yourself.

(33:01):
But after a certain point, I'msaying this, I don't know this well, after a certain point, it just is an event that happens, and it's not your fault.

Yeah, I think that's so important. It's not your fault. And yes, maybe if you go out partying and you drink a lot of alcohol, and - there are repercussions to... to things the same with overdoing sugar and the way your body becomes super sensitive to all these things. Of course, there
are repercussions, but the ideathat any of this is your fault is a ridiculous one, and one that we are, I think, made to feel so often by the medical system. And I don't want to repeatedly knock the medical system, because there are times that it can be amazing, but I don't think it's good at helping

(33:44):
people with complex,multifaceted conditions.

I think also they and this isn't just doctors, it's nutritionists and physios, and anyone trying to help, they do accidentally send the message that it's your behavior that makes a difference, because all the things they're telling you to do is like, do these exercises, eat these things,
don't do this, and then thesymptoms will get better. So actually, all the information you're getting from the professionals is that the things you do will predict the course of this. So I tried to sort of acknowledge that, while also empower that, saying it's not it's not my fault that I've got

(34:19):
the body that I've gotten, thatmy body is so hyper sensitive, so that's kind of where I've landed.

But what are the nutritional things that you have found that have made a difference for you?

Definitely learning how to manage my blood sugar levels has been incredibly helpful. I used to feel faint really easily right for when I was a teenager, there's a book called Glucose Revolution, which is something incredibly useful, and it's quite basic stuff about eating enough protein and fat

(34:51):
every time you eat that kind ofthing. But I've found that transformative, particularly in terms of less anxiety, improved mood. I. It could contribute to having fewer migraines. And then the other thing I try and follow is a low histamine diet. As you all know, I'm sure it's can be incredibly restrictive, but I

(35:14):
try and follow some basicprinciples around that, about not eating leftovers, not eating aged food, white food.

Yeah I thought that was interesting when I was reading that, because I'm I will always eat, you know, very old cheese and things like that, but I'm always super conscious of certain other real histamine triggers for me, I thought that was an interesting principle, because that's
presumably to do with thedecomposition of things and the way that your body can process it. Because, as you see, all food, even eating, can essentially trigger that histamine, really.

Yeah. So my understanding of it is that the older food is, the more histamine it has in it.

Okay.

It felt like a straightforward rule for me, and then some specific things that seem obviously to me to have an immediate flushing reaction. So I don't have any dairy, because it's one of the few things that I found does seem to cause me to flush very soon after eating it. I don't eat gluten. I've never
quite figured out whether that'shelpful or not, but I started and I'm scared to

oh, I have that fear with load of supplements that I take, maybe this is the one that is keeping me balanced. And so people will say, Why are you taking all of those? Because they don't know which one is keeping me, okay,

Yeah, and I'm exactly the same. Because even let's say you're taking however many supplements, you're doing that in parallel with different levels of stress in your life, different diet, different exercise, different medications. So actually, when you are in a good phase, a relatively good
phase. It's impossible to knowwhich of those factors or which combination of those factors are the thing that's done it. It's almost superstitious. It's like, okay, well, I better keep doing every single one of them, because somehow in that combination, it was helpful.

Absolutely. And that, I think, is a huge thing, that we live with this fear every day. You've talked about it, you live with the fear of the migraine coming. You live with the fear of the pain. You live with the fear of a flare of your skin or your gut, and try your best to control any aspects
that you can. And actually, alot of the time it's kind of random. You go on holiday and you feel better. Is that because you're not working? Is it because you are in a different environment. If some people go on holiday and they feel far worse because it's a different environment.

One thing that quite reliably makes me feel worse is going on holiday, not when I'm there, but about a week or two afterwards, the combination of bad diet, well, bad in inverted commas, breaking my rules and flying is terrible for my body, so I have a nice time when I'm on holiday, but
then I pay for it when I'm back.

And that goes back to what we talked about quite early on in the conversation about having to make that choice about what you're prepared to expend your energy or what you're prepared to risk feeling awful for.

And you have to consider other people as well. If I was single, I wouldn't really miss that sort of week of doing a holiday, but I have a partner, and he wants to go, and I've already our life is so dominated by the things I can't do, there's a balance of that and just the general social
norms. It's Christmas, and yourfamily have invited you here, and you have to take the hit and take the risks because of the other people in your life as well, I think, which is added into the mental calculation.

And that's not in a giving up yourself kind of way. That's actually in a adding to your joy or adding to your life, because if you remove all of those elements of things and people that you enjoy, then what have you got?

Yeah, and it's a balance like my brother in law lives in law lives in Ireland, and my partner is going to see him this weekend, and I'm not going because I know that I can't do a Friday to Saturday flight and not have it hugely knock on effect next Monday. So yeah, it's this constant
decision per event about if youmost want to do, what are you most expected to do? What will the impact be? What else is happening in your life at that moment, and kind of come to a fair balance that keeps everyone happy.

Talk to me about finding someone who eventually was able to put together 23 years of symptoms and give you a diagnosis. There are multiple facets of that that I'd love to hear about, but tell me about the actual seeking diagnosis, finding a diagnosis.

So it's really odd how it ended up happening. And if this particular event hadn't happened, I probably still wouldn't know what was going on. But I posted on my Instagram account about chronic migraine. I don't know what compelled me to do it, because I hadn't talked publicly about the health
stuff.

An excellent post. It's in October of 2025, I think you posted that.

yes, yeah,

just in case people want to refer back to.

Yeah. It's I thought I've learned a lot and it might be useful. So I shared that, and then I got a message from someone I don't know, lady in her 60s, saying that her daughter has quite. Migraine because she has hypermobile, a LIS Danlos Syndrome, and would it be worth checking to see if I
was hyper mobile? And I'vespoken to her since, and she said it was a bit of a gamble about whether she sent it or not, because it was maybe a bit intrusive. And I replied to her, and I said, Well, funnily enough, I am hyper mobile, and this, one of the strange things, is this idea of my

(40:20):
hypermobility, or theacknowledgement that I had hypermobile joints, had come up multiple times in medical appointments, it's just that no one thought very much of it. So, I said, I've heard of Ehlers, Danlos Syndrome, but I'm not bad enough, but I am hypermobile. And she said, you might want to
check. And so then I did someinvestigating, and I read more about because you google Ehlers Danlos Syndrome, and the pictures that come up are extremely mobile joints that I don't have.

It's extreme, yeah,

And so it's very easy to think I don't have that. And I think part of why it took so long for anyone to put the pieces together is because I'm extremely mobile in joints that aren't typically measured, so I just meet the criteria for hypermobility on the Beighton scale.

I will post some information for anyone that this is resonating with on actually, where you can just review the Beighton scale and give yourself that simple test as to whether you should be exploring.

And the interesting thing actually, is that you can get a maximum of nine points on it, and five is considered the sod for being hypermobile, and I score five, and that's one component of getting a diagnosis of Ehlers Danlos Syndrome. But actually, there is a lot of work happening
at the moment, building up to apublication in December of this year, 2026 where they are changing the diagnostic criteria for EDS, because they have acknowledged that a lot of people are very hypermobile, but it's being missed because people don't score highly enough on the Beighton Scale. So for example,

(41:58):
my feet and ankles are hypermobile. My shoulders are but that would never have been seen because no one was testing it anyway. I looked into it, and I thought, I do just about meet hypermobility on the Beighton Scale. And it turns out, hypermobile ETS is caused by faulty connective tissue that
your connective tissue iseverywhere, so it causes hypermobile joints, but it also causes skin problems, digestive issues, and it causes chronic pain because it affects your nervous system, but also when your joints are too floppy, your joints are normally what's supposed to give you stability,

(42:35):
but muscles grip on because theyhave to take over to provide stability, and that causes chronic pain, so that, in combination with dysfunction in the nervous system, generates this experience of excessive pain. So I read about all of this, I was like this totally fascinating, strange feeling of
this might be it, and then I'mextremely fortunate that I could pay to go privately. So I found a doctor who specialized in hypermobility, and went through the medical history, and she confirmed that I had Ehlers Danlos Syndrome. What's important to mention is that if you don't meet the criteria

(43:14):
fully for hypermobile EhlersDanlos Syndrome, but you have hypermobile joints and some sort of chronic, systemic symptoms, dysfunction, you may well meet the criteria for Hypermobile Spectrum Disorder, which is slightly different version of it. And I think when we come to December, those with the new
diagnostic criteria, maybe thosetwo will be blended or shift a bit. So that, that was in October. Then it was because of this lady deciding to send me this random message on Instagram, and because I decided to talk about a migraine. So it's just amazing how it fell out really,

I believe that also an element of it is because of this laxity throughout your tissues there's also venal - it affects your veins. So that can also be a reason that you have this problem with migraine or you have a problem with heavy bleeding. I don't know if that
is the link to endometriosis,but I think that that connective tissue, what we have to understand is it is throughout every single part of your body. It can have such huge and varied health implications.

And that was what was so powerful to realize that suddenly it was that umbrella explanation that covered everything. And for about a month, my partner was very tolerant of it, but I kept being like, do you remember when that weird thing happened about as EDS I talked in that essay, I
had a hematoma once thatsuddenly appeared after a Pilates class. Yeah, because like, they've been slightly rubbing on my hip bone, and the doctor was like, well, that's weird, and it went away. Now I know that that was because it affects the walls of your blood vessels, and they break more

(44:51):
easily the satisfaction. BecauseI'm an academic, I'm a researcher. Love understanding, having the dialog. Put explanation for it, and there's a specific cruelty to just not knowing why things were happening. So it's been incredible to have that element of resolved.

I think that's a really interesting perspective that you take on that as well. Because rather than you approaching this and saying, I've just had a diagnosis of learning that I have something that is lifelong. It's never going away. There is no cure for it. You have taken
that on as almost sense ofrelief that things started to make sense and you are able to put things together.

I guess it's both like lots of people identify with. It's this totally strange experience after diagnosis, where you're feeling all those sort of things in parallel. But I really remember before seeing this doctor, saying to my partner, even if there's nothing that they can do, just being
able to know what it is will belife changing. I had a message on Instagram the other day from someone with EDS saying that the diagnosis was the best day of her life. It's just so meaningful to people.

Can you just talk to me a little about some of those strategies that you've actually picked out for yourself, rather than necessarily anyone coming and giving you advice on how you do manage day to day? One of the things that we haven't necessarily talked about is
fatigue, mental fatigue,physical fatigue. I believe that you talked about the pain a lot, but I think that you also experience just a fatigue from from activity

I do, but I feel like it's there are much, much worse forms of fatigue. So I can work, and I can leave the house and all that kind of thing. But I definitely, relative to my peers who don't have a health condition, yeah, I definitely get tired much more easily. Need a lot more breaks that that kind

(46:55):
of thing, yeah,

And the strategies that you have built into your life to manage your energy, manage your pain, is working out what you are prepared to do, and talk to me about the structure that you've put around work and around socializing.

I'm reasonably lucky in this particular job, in this particular stage of my career, that I have more control and flexibility than I did when I was more junior, or for my colleagues who have more teaching load, for example. But I try and avoid back to back meetings. If I possibly can, I
find that I really need to stopfor a bit. Lie on the bed, lie on the floor, move around, play on my phone, just to decompress a bit. I find anything back to back very difficult, so when I'm in control of it, I would do that really try and avoid too many meetings day, even if I can see my calendar is available, I

(47:43):
know that I need that time to dosomething low effort. I find it very draining to have meetings linked to that. I say I've got very good at saying no. I know there are some people who are like, Oh, I'm a people pleaser. I don't like saying that. I got over that a long time ago. If I'm asked to do something,
default is no and you have toconvince me that it's worth doing. What's so interesting about that actually, is that every so often something comes through, like, when I saw your email reply to you in half an hour, I was like, definitely. And I actually,

I didn't even think that I was in with a shot, because you basically, say, I pretty much don't do a podcast.

Yes, it saves me saying it each time, which is why I have that. But a positive spin on this is that I only do things in my life that I really want to do. There's the odd various work tasks that you just need to do, but generally I only collaborate with the colleagues that I really want to
collaborate with. I do theprojects that I really care about. I go on the podcast. I do the media opportunities that I think are really important and interesting and socially I will only expend energy to see people that I really love. So even though I do much less than other people, the things that I do do

(48:58):
are high quality and reallyvaluable,

High value. Yeah, I really, really agree with that as an amazing recommendation for what people do just day to day. Is it worth it? Is it worth your time? And that's not to be too cut throat about the people in your life, but it selects the people who are giving you good energy and
the people that love you andthat you love rather than wasting your time.

Because if you go out for dinner or something and you're going to pay the price the next day, in terms of you need to have a quiet day and not do very much the next day, then yeah, that has to be a hit. That was really worth taking.

Something that I believe that you do, that has made an instrumental difference in my migraine is no work in the evenings and the weekends, I actually gave myself a rule. 9pm is my absolute cut off for opening my laptop. Otherwise, I pretty much wake up with a headache. So whilst some
people might not necessarilythink that blue light is too bad or I. Kind of triggers. If you can work them out, it can, does make a difference?

Yeah, my cut off is four or 5pm I find it really difficult to get up and look at each screen or laptop beyond that point. So that's just that. It's a non negotiable. I'm just not going to work in the evenings ever unless something dramatically changes. But that's how it's been my whole career,
and it's deeply frustratingbecause I see my colleagues do more than I can do, because I know that they put their kids to bed and then they get back on the laptop, but it's just no way I'm picturing it now, and it gives me a migraine just to think of trying to squint into a laptop in the evening, after

(50:41):
I've worked all day, just Yeah,

Yeah,

No way.

To work out those things. Yeah.

It's taken decades to figure out what my body can do, and that it doesn't matter what other people can do. You have to figure out what you can do.

That's a really interesting point, because you mentioned before about running a 10k being detrimental, but you actually find that physical exercise is a non negotiable for you in terms of controlling your migraine. Is that right? Or is it across all of your health control?

It's all of it. And again, it's been a really huge period of trial and error, because what I've been told. Which really fits with my experience, is that if you have EDS, there's like quite a narrow window. Not exercising at all is really bad, and overdoing it is bad. So you have to figure out
what's the space you can operatein. In the middle. Is very unusual for me to for a day to go by and not exercise. I try and some point between five and seven spend half an hour doing something. It's not like exercise the way other people might see exercise might be gentl Pilates stuff, but moving

(51:50):
my body, strengthening my body,relaxing my body, relaxing the nervous system. I'm certain it's the key thing that has given me some quality of life despite all the symptoms.

Have you found people who have enabled professional advice on this who? Or has it been wholly down to you, listening to your body and working out what works for you?

Both. I think since knowing it was EDS, I've definitely had really helpful professional advice, particularly around be less than you think you can do push it? Because I think the problem I had before was that I would exercise and then I would think I could do a more difficult
video or harder class, or go tothe class twice a week, and as soon as I did that, wheels would fall off the bus and I'd be back down to zero. So I've definitely had really useful, professional advice about going slowly, but also specific advice about what cues you should give your own body while you're exercising,

(52:45):
because it's quite easy to doPilates in a hypermobile body and be doing it badly and you don't realize like you've locked out your joints, for example, it doesn't even necessarily require seeing a professional. There's tons of useful information on Instagram and YouTube about exercising safely when you're
hypermobile.

But this is an area that I'd like to talk to you about, because it's an area that you're really familiar with in terms of your mental health. Work that you do, there is so much information on social media regarding I don't necessarily think there's that much about EDS yet, but there is a lot

(53:25):
about multiple different symptomsets of various chronic illness. There is a lot of snake oil. There is a lot of pushing of supplements. There is a lot of as you mentioned earlier, if you do this, this this is going to sort it for you. I think that's similar in the mental health space, in terms of what people

(53:47):
are seeing. How do we as peoplewith these conditions start to filter some of what is out there

It's difficult, and you certainly have to wade through a lot of junk, I feel like I've gone from famine to feast about the information I'm suddenly receiving about,

yeah, because of your algorithm,

exactly, and because of what I'm looking up, suddenly getting access to this world of information that I didn't have for so long. There's a trial and error of figuring out which accounts you find helpful for you. I trust accounts from people where this isn't a fail safe thing at all,
and I don't think it's fail safein mental health, but if they are professionals who work in this space, that there are some people I follow on Instagram who are physios or personal trainers, for example, and their whole job is about looking after hypermobile people, but they're also hyper mobile themselves.

That's such an important differentiation that it's people who will specifically have an understanding of these conditions, because there is so much generalized health information. I mean, I particularly find it at my age, because I am absolutely hammered
every day with information aboutperimenopause, menopause, what you should be doing, the amount of protein that you should be eating, the amount of weight that you should be lifting, blah, blah, blah, blah, blah, blah, none of it takes into account any specific person's health condition.

And that's dangerous, isn't it? Because some basic advice like that, it might be good idea to train and start running. You mustn't apply it to your own circumstances. Yeah, it's dangerous and messy out there. But equally, once you've found the good accounts, I have found them enormously

(55:37):
educational and comforting. Butyeah, you're right that the volume of it, and yeah, the the overconfident stuff that selling it to you, the unqualified people, it's -

- check credentials, and..

- see who they are outside of Instagram as well. Can't know for sure, but you can have a look and see if they're claiming to be psychologists or whatever. Then are they affiliated? Are they actually practicing? Do they offer appointments if they say their research, is there a university
website attached to them andthat kind of thing.

Yeah, have to dig a little bit deeper.

Yeah.

I'd like to talk a little bit about some of the parallels of the work that you do in mental health and looking at that in complex chronic illness. You have written an essay recently about self diagnosis of mental disorders and the way that they're particularly amongst
youth, because that is your areaof expertise. There's a rise of self diagnosis in mental health disorders. There were interesting things that came up for me, and this, this idea that people you wrote that there's the tension in who the expert is, in this and understanding ourselves can often play into

(56:49):
trying to seek a diagnosis fromsomeone else who is perhaps resistant. I think a lot of people in this space, in this complex chronic illness space, I'm not necessarily saying with EDS, because there are specific criterias, but up self diagnosing and treating themselves based on this self
diagnosis. You just talk to me alittle bit about the dangers or the help that that can have when actually going and seeking help from professionals.

Yeah, so I originally was interested in self diagnosis of mental disorders as a problem or a danger. When I started looking into it maybe four or five years ago, I've really changed my mind on it. It's completely understandable why people do it. It's a natural human desire and
need to understand what's goingon. So talk specifically about mental health stuff now, but if you're distressed or having some sort of difficult symptoms, of course, you want to have a word to understand why that's happening and to be able to communicate it with others. You also phone if you're

(57:51):
particularly if you're relyingon the NHS. You can't get a professional diagnosis. So people self diagnose because they have no other choice, but there are risks and that you could get it wrong. Therefore, maybe start implementing some strategies that aren't getting at the problem. There's also
lots of backlash about a lot ofanger towards it, particularly because there has been a shift in power, I think, since the rise of social media in the internet, patients and the sufferers are gathering they're forming communities. They're sharing expertise with each other, they're learning

(58:27):
information about themselves.Really changed from the times in the past, when we the patient, was unknowing, and the all powerful doctor explained to us what was happening. So there has been that power shift, and a lot of people don't like that. There's been that power shift, particularly obviously the
people who traditionally dodiagnosing, they quite understandably, feel like diagnosis is, is a is a skill requires a lot of clinical knowledge, a lot of expertise that any one individual cannot fully have. So there is this tension between everyone about who has the right to label

(59:05):
what's happening to you who hasthe expertise. So I was interested in all of that had to do with mental health, and I wound it up feeling quite Yeah, compassionate and understanding towards people who do self diagnose. And then yeah, there is this parallel phenomenon happening in the chronic illness
world, people are suffering.They want to understand why they go online. They find a great deal of information, some of it messy and wrong, but some of it really powerful and self clarifying and validating, and they educate themselves about what's happening to them. There's a general sense that

(59:39):
self diagnosis is allowed ininverted commas, if you're doing it on route to a doctor.

To a professional diagnosis.

Yeah, people think it's acceptable if you and this is true of teenagers as well as adults. It's acceptable if it's a temporary theory that you formed about yourself, but you then have to take to a professional to get checked. But anyone who is deemed to have stopped the self diagnosis is
derided and judged and treatedwith suspicion, possibly unfairly.

Emily Kate Stephens (01:00:08):
It's something that you raised in an essay that you wrote on the problem with mental health awareness and this idea that we've all become so aware of it. So perhaps, yes, we with mental health or with these chronic health conditions start to form the basis of a self diagnosis,
but there comes this hugeproblem that there is greater awareness than there is the ability to seek help, or the ability to or the NHS or other healthcare providers to actually offer help to the people who might be seeking a diagnosis or seeking some kind of intervention.

Lucy Foulkes (01:00:39):
Yeah, people through public health campaigns, people have been told what mental health problems are and told to go and get help for them, and then they turn up and the help isn't there. So the position we're in now with so many people self diagnosing, I think, is an inevitable
consequence from the mentalhealth awareness campaigns that started maybe 10 or 12 years ago. But you can't blame people for wanting to understand what's happened to them, the trouble or the risk, I think, comes where there are some sort of fringe cases, because most things is not a binary, right? You move up

(01:01:14):
into the diagnosis arena if youhave more of the symptoms and they're more severe, but I think there's a gray area of people who mental or physical, are having symptoms that are disruptive, distressing, problematic. They don't fully meet diagnostic criteria, officially. They have adopted
that language for themselvesbecause it's helpful for them to understand what's happening to them. I think, on a personal level, totally understandable. But I think at a population level, once lots and lots of people are doing that, it starts to change people's understanding of what that disorder is, or it

(01:01:49):
starts to make it more difficultto access help, etc. So I think that's where the controversy exists.

So very interesting, if you put it into the context of you talking about your diagnosis of EDS, because actually what you've done is you've used that diagnosis as a way to make sense of what's happening in your body, rather than for it to then be - I think one of the big things is that
not to make it an excuse. I havea child who is diagnosed as autistic, And he is fully functional in society and some people have said to me, Well, what look he's fine. Why did you find it necessary to seek a diagnosis? And in a similar vein, it was a way to understand certain things, behaviors, what

(01:02:36):
triggers and to be able tomanage it. And we have always made it very clear to him that is never an excuse that he can rely on for not not fulfilling his potential, not fulfilling his life. And actually, he considers it to be hugely helpful in his everyday life to know that that is a situation
that he has, but he never relieson it. He never uses this in the negative,

Yeah, I think it's really interesting to give that example, because definitely what seems to enrage people about self diagnosis, or about the increased use of diagnosis, is this idea that people use it as an excuse, either an excuse to not have to do something, or as an excuse for what they consider
to be unacceptable behavior. Ithink that's partly why people get so angry about it. So it's this balance, isn't it, because it can become all consuming that I completely understand this from my own diagnosis, if especially something like autism and ADHD, which is so sort of fundamental to who you are, you

(01:03:37):
could easily start seeingeverything through that lens, and and it could become limiting if you sort of have the belief I'm autistic, therefore I can't do X. So it's that balance of is I want to use this information in a helpful way, but not better control everything or that, or use it as a reason to not do
something.

Think is the same in in these physical, complex chronic illnesses. Absolutely, we do actually have to listen to our bodies and use diagnosis or use that medical strand to inform what we are and aren't able to do and what is going to potentially make us worse. But we also have to be
really, really careful withequating our identity to that illness.

And it's hard, isn't it, because every step that you take, every decision that you make, the disorder is you have to try quite hard to not let it completely engulf you.

But it is part of you, such a huge part, so..

Yeah

Well, the other thing just to mention at the end of this is, I think one of the things that is super important for us as a group of people who have these illnesses, is for us to get out of our silo of complex chronic illness and try and reach a wider population, because there will
be people out there who havebeen going through similar things to that which you've been going through, who don't have any understanding. Understanding that there might be a diagnosis or there might be something that brings it all together, and that's one of the reasons that I thought it was really

(01:05:08):
interesting to talk to you whohas such a life outside EDS. I'd love for people from outside of the echo chamber of misery, as I call it, to access information and access a little bit of hope and understanding from what other people have been through with these conditions.

Definitely keen to demonstrate that everyone's different, but for my specific set of symptoms, even though they are very loud and very limiting, I actually live a meaningful life outside of them. And yeah, it's been difficult sometimes, but it's not my identity. It's something I carry

(01:05:50):
around with me every day, but Iview myself as something quite distinct from it, and I think maybe that's a useful way of thinking about it as well. That's amazing. Thank you so so much.
Thank you so much for having me.

Gez, tell me your thoughts.

Gez Medinger (01:06:08):
I thought it was a fascinating interview. And you know what my first feeling upon listening to it was? I just really want to be able to give her a hug. I mean, oh my God. She's been through a lot, 23 years of this, with most of it having been completely lost at sea in terms of trying to work
out what the diagnosis was andwhat was actually going on. It's hard enough dealing with complex chronic illness if you've got a handle on what you think it is, but for her absolutely bewildering and so disorientating and the degree of the challenge of dealing with the medical establishment over

(01:06:43):
that whole period as well. Imean, obviously there's the G word, the gas lighting, which a lot of people will have experienced with complex chronic illness. There's a bunch of things that jumped out, so I'll just run through some of them. The first is that the experience of that 23 years, no one knows
anything. You know. It doesn'tmatter who you go and see. But the things that jumped out from the interview, the planning, how everything you do requires military precision and also horrible choices.

Yeah,

You don't get to have your cake and eat it. And what that also means is that any spontaneous decisions are pretty much a no go. Your ability to live life like a normal human being around the way that normal humans, you know, make plans, do things, no, you exist in a different plane of existence
where everything has to beworked out days in advance,

Because everything has a cost.

Yeah, exactly that. And you have to deliberate what that cost is and whether the benefit is worth the cost.

That is so hard balancing what you have to do with what you want to do. And I'm a firm believer in doing those things that bring you joy and feed your soul and nurture your body, but at the same time, let's be under no illusion that the majority of us also have to do the things that we have to do
that, keeping food on the table,keeping the bills paid, keeping other humans that rely on us alive. That comes at the cost of you doing the things that might feed you, feed your soul.

Something else that she said, was this idea of not trusting your body and living in fear, and when you can't trust your body, and you can't trust how it's going to react to the things that you do, that's such a fundamental existential state that you are in that is unhealthy
psychologically and on a nervoussystem level as well, but you cannot help it, because that lack of trust you have for your body is deserved. It's fair. It's not unfair. It's the reality that you never know what it's going to serve up and connected to that is this idea of when people suggest, oh, have

(01:08:38):
you tried x, or have you triedy? And you think, Well, what if that's the one thing I've been doing wrong this whole time? And the madness journey that you then go on into between drawing a line between something you've done or what you've consumed and what your symptoms are, and it's this impossible spider's web of
trying to join dots A, to joindots B, and you're trying to look for these connections to make sense of it. But like Lucy's partner said, sometimes shit happens.

And you have less control of it than you think.

Yeah, it's natural for us to try and make sense out of it, because if we can control this unpredictable thing that comes and smacks us every day, week, month, whatever it is for however long, if we can control the things that go into that that helps us take back some control of our bodies. But
actually, the reality is that weonly have this much, but you can't ever tell how much control you've really got. You know, some things we do will definitely make us worse. And then there's this whole muddy area of I don't know, did that make me worse? Did that make me better? And it sends you mad.

And we are so bombarded, I feel with information, particularly on social media about the way, and even if I just look at the chronic illness accounts that I follow that seem to be giving me conflicting advice. There are so many things every single day that I'm told this is going to
be the key. This is going to bethe one thing that makes you better, or this is the one thing that is causing your illness. It is. Is such muddy territory, it is so hard to navigate it.

And the other part of that is the way that you end up creating these superstitions. After trying to work out if you've had a good period rather than a crash, you're like, oh, it's because I had a banana two nights ago. That's why I've had a really good day now. And it could be anything. It could be I
had a polo mince like, whoknows, but you start trying to create these connections.

Positive and negative.

Yeah, and there's almost no way of avoiding it, because you're desperately trying to make sense this thing that makes no sense, anything else that stood out. So yeah, she made a comment about how the world of social media out there, which is most of us, are restricted in our real world
interactions, and so most of ourinteractions come through social media and digitally, but that social media world of chronic illness and solutions is dangerous and messy, and those are her words, and I completely agree with those when it comes to advice. But some of this stuff out there is really

(01:10:57):
powerful and clarifying andvalidating, and that's the sort of the double edged sword with all of this stuff that pops up and the algorithm starts serving you is sorting through the stuff that is dangerous and messy and the stuff that is valuable, powerful and helpful, and the key thing being trying to
identify the accounts and thepeople who are legit.

Yeah,

For want of a better word.

That was very useful advice to move outside of their social media and essentially fact check who they are and what they are actually doing in this space, check that they are qualified to be offering this kind of information.

And do they have an agenda? Are they selling something, whether it's care or whether it's supplements or whether it's treatments, how objective is the viewpoint from which they're coming and do they have a stake in it?

Yeah, that is incredibly good advice. Fantastic. As always, it's been an absolute pleasure. Really enjoy our conversations and reflections. I have to say that Lucy was just an absolute pleasure and an inspiration in terms of what she has been through and the way in which she

(01:12:04):
now wants to try and use herexperience to help other people going forwards, and to help people to understand what is going on with their bodies.

I would completely agree with all of that.

Thank you so much for joining me.

Pleasure. As always. You

Thank you for listening to Make Visible. Please do like follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose

(01:19:41):
lives have been affected byenergy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how visible could

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