Episode 16 - Jennifer Smallridge: Demystifying Chronic & Invisible Illness

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Maddy: This podcast is recorded on the lands of the Wurundjeri people of the Kulin nations. We pay our respects to the traditional custodians of this country and elders past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.

Larissa: Welcome to today's episode of No Spoons to Give, the podcast where we explore life's ups and downs with chronic illness, neurodivergence, and disability, and we chat with the voices that make our community so brilliant.

I'm Larissa, and I've got the lovely Maddy here with me today. How are you, Maddy?

Maddy: I'm doing well. I am... Okay. That's not true. I am in a bit of pain, but I am super excited for this conversation, so the excitement has overpowered the pain. What about you?

Larissa: I'm sorry to hear you're in pain, first of all, but I'm also very excited for this chat and, yeah, I'm hoping after this we can just take a chill and get some heat packs on us and take some Panadol or whatever we need. Yeah, I hope it passes.

Maddy: Thank you. I'm sure it will go down a little bit very soon.

Larissa: We hope so. Yeah, I'm going good, apart from that, but I do have a recommendation for you today-

Maddy: Great.

Larissa: -- on Netflix.

Maddy: Ooh, fantastic.

Larissa: I think you may have already watched this, but it is Apple Cider Vinegar, about Belle Gibson.

Maddy: My obsession.

Larissa: Yeah. I...

Maddy: Please tell me more. Anyone who hasn't... There must be-

Larissa: Go watch it.

Maddy: ... no one who hasn't watched it. No. For the people who haven't seen it, please tell us a little bit more about it.

Larissa: Yeah. Apple Cider Vinegar, it's a show based on this woman, Belle Gibson, and she really rose to fame in, was it like 2014, 2015?

Maddy: Yeah.

Larissa: As a wellness blogger. She also had a cookbook called The Whole Pantry. Now, the whole, I guess, controversial thing with Belle is she said that she had terminal brain cancer and that she cured it through whole foods, and she did not have brain cancer, she did not have any form of cancer. She also fundraised money for a terminally ill little boy and his family, and then never passed the money down to them.

And just, this makes me so mad, I'm getting goosebumps talking about it, but there were lots of people during that time who actually had cancer who stopped their treatment, or didn't have the treatment they were supposed to have, because she led them to believe that they could essentially cure it through green juice and breath work or whatever it was she was proposing.

Yeah, I used to follow her and use some of her recipes just for general healthy eating and all of that. But yeah, I remember this time quite clearly when it all came out. I definitely recommend watching that. It is just mind-blowing.

Maddy: It is unbelievable that she was able to get away with that, but also at the same time, I kind of understand how she could get away with it, but I think it is such a gripping watch. I should say, anyone who's concerned, she was not paid for her story. This is a fictionalised-

Larissa: That's right.

Maddy: ... version of the whole real life horrors that she has inflicted on a lot of people. But it is such a fantastic TV show.

Larissa: Yeah, it's really well- yeah.

Maddy: You got me onto it and I could not stop watching all weekend.

Larissa: Yeah, it's really well-made. And I think at some point we will have a discussion about, I guess, sometimes mainstream medicine does let us down, particularly for people in our chronic illness and disabled community, and sometimes you are looking for other solutions, whether that's natural medicine, or you may be in a desperate situation where you want an answer. She really preyed on those people, and that really pisses me off.

Maddy: It really pisses me off too. Yeah.

Larissa: Have you got a recommendation for me?

Maddy: I do. I don't think this one will piss you off.

Larissa: I'm glad.

Maddy: It's called A Kind of Spark by Elle McNicoll. It's an extremely touching and powerful middle grade fiction book about an autistic girl who campaigns for a memorial when she learns that her small Scottish town used to burn witches simply because they were different. The book is short and sweet for anyone who struggles with energy and loses a lot of energy while reading. It also has a TV show, which is meant to be incredible, but I haven't watched that one yet.

Larissa: I'll have to check them both out.

Maddy: Yes.

Larissa: Oh, that's so interesting.

Maddy: It's like the polar opposite of the experience of watching Apple Cider Vinegar in that you are watching this person really make a change for the better in their world and they're a young autistic girl, so it is really lovely. So if you want the antidote, I mean, [inaudible 00:04:46].

Larissa: Maybe after Apple Cider Vinegar.

Maddy: Yes. If you need to feel like the world is going to be okay again.

Larissa: Watch that.

Maddy: Yeah.

Larissa: For sure.

Maddy: Today, we'll be chatting with Jennifer Smallridge, an exercise physiologist who specialises in people living with complex and invisible illnesses at Invisibly Brilliant, and works as a clinical educator at Connection Medicine, a health profession education company that offers evidence-based guidance and mentoring to support health practitioners improve their understanding of invisible illnesses.

Larissa: Welcome, Jennifer. We're so excited for you to be joining us today. You're doing such incredible work in supporting chronically ill people, and your team at Connection Medicine are really making a huge difference by educating health practitioners. So, yeah, I'm very excited for this chat and very excited to have you in the studio.

Jennifer: Thank you both so much. The excitement is very mutual.

Maddy: For those who haven't heard about Invisibly Brilliant or Connection Medicine, do you mind telling us a little bit more about them and what you do in these roles, and also how the ideas for these incredible businesses came about?

Jennifer: Yeah, absolutely. I'll go with Invisibly Brilliant first. That's my, I guess, clinical hat that I wear, my exercise physiology hat. That is really just little old me at my laptop doing telehealth services, primarily like the invisible illnesses that we're going to chat about today, so fatigue, POTS, pain, and I am expanding my team to include an EDS aware physio, so very excited to share that and basically increase outreach, so that feels new and exciting.

I really wanted Invisibly Brilliant to be the clinic that my clients always hoped for, I guess, in terms of accessibility and knowledge and just a safe space or a safe enough space. And now that I have a team member, I'd love it to be the accessible workplace that many people dream of when they live with chronic complex illness. So I hope that I'm achieving both. We're working towards that all the time.

Then Connection Medicine is the baby of Florence Kelly and myself. We started Connection Medicine in 2020. It was lockdown in Melbourne, so we were only allowed to sit outside. I still remember the hill and the picnic rug we were sitting on, and we'd both been finishing up at our workplaces and thinking about what was coming next. And Flo and I basically came to the conclusion we can't just expand our schedule to see more people. I wonder if we could educate more health professionals to basically broaden the reach of all of the health professionals in the community rather than just burning ourselves out and crumbling as a result.

So Connection Medicine was devised. I still look back and laugh because we just knew inherently what we were going to teach health professionals, but we were so interested and focused on what food we would have at our course and what the colours would be for our website.

Larissa: The fun stuff.

Jennifer: We're going to have organic calico bags and organic biodegradable pens, and they are the mainstays of our course. The education is there, and it's beautiful, and I love it so much, but the experience for the people attending became a real priority, because CPD often leaves health professionals feeling like inspired and knowledged, informed, but exhausted.

Larissa: They can be so dry.

Jennifer: They can. Chairs, lecture slides, air conditioning or heating that's just not quite right. Ours is in a yoga studio, people lie down, there's bolsters, there's a massage ball. The room is just... It's really special in that way. And I think still people feel like, "Oh, that was a big weekend, but not your classic sit in an uncomfortable chair CPD." Yeah, they're really the two branches, I guess, of my professional life at the moment, and I love them both so equally.

Larissa: That is incredible. You must be such a busy person. Particularly, so my background is as a health professional, as an osteopath, and I can totally relate to what you said about CPD. I remember doing my dry needling course in Brisbane in 40-degree heat, and I have a needle phobia, shakily and covered in sweat, trying to put dry needles in people. Every CPD course I've to has been that awful experience.

Jennifer: Yes.

Larissa: And yes, you learn, but I love the idea of what you're doing. But yeah, making it a safe and accessible space and something that people want to go to, that is so needed.

Jennifer: Thank you.

Larissa: So needed.

Jennifer: We agree. And I firmly believe, and I'm sure the evidence would back this up, that you learn better when you're comfortable anyway.

Maddy: Oh my God, yeah. Absolutely.

Jennifer: You are more moving towards nervous system regulation and able to connect and to listen. People can take timeouts at any time in our course. I love seeing that in action, because if we can't pace and space ourselves as health professionals, I find it hard to believe we'd be able to help other people who need pacing and spacing.

Which makes me think about what you said around being busy. I probably would have used to have been quite a busy person. Then I experienced burnout around the same time as Connection Medicine was born. And I do have two baby boys, so that paces me and spaces me, because I can't work as much as my brain would really want to. I have to be on in other ways.

So I find these days, things feel like there's a fullness and excitement, but I don't feel that hurtling busyness that I used to as an earlier practitioner, which is a bit of a trap, I think.

Larissa: Yeah.

Maddy: Yeah.

Larissa: Yeah, I think what you're doing is so incredible, because yeah, my experience as an early health practitioner was your first goal is to just try and get patients coming through the door for a year or two. It feels like you're just trying to build up your patient base, and that's the goal that you're set and you get there and you're like, holy moly, this is exhausting and you do find that when you're overwhelmed, the patient care that you're giving people, despite your best intentions, can really drop off. Yeah, it's so hard.

Jennifer: It actually is. I'll never forget when I notified, I had an adolescent client, so a lot of the communication came by his mom, and I notified her that I'm stopping work and I'm experiencing some burnout symptoms right now, and she was so intuitive and empathic about it, and she... I'll never forget, she said, "I did notice at our last session, you looked like the rainbow fish that had given away her last sparkly scale." I know. I was like, "Yes, that is me."

Maddy: You would have felt so seen.

Jennifer: So seen. And it brought up some really complex feelings too, of like, well, I'm the health professional here. Why can't I keep going, keep pushing. It was COVID times, and that was a complex time to be a health professional, so it was perfect storm.

But yeah, that idea of early career, not busy enough, mid... I shouldn't say mid because we don't know where the middle is, but after your early grad years, suddenly so busy that you don't know what to do with it all. And so I feel like my two businesses have been born from the ashes of that burnout.

I feel that every little thing has led up to this point for me to work in these two businesses and give me the confidence and courage to back myself and really orient myself towards my purpose, which is helping this beautiful community.

Larissa: I love that. So I want to ask you a question because I feel like I bring the experience of I have chronic diseases or chronic illness myself, but then I've also been on the other side of it as a health practitioner, and it's something that really stumped me in my career. Because I mean, as a patient, you sometimes feel frustrated because you can't get the answers and help you need from a health professional. But then equally, as a health professional, despite my best intentions and all the research I did, I never had the right tools to help people. How do you bring all of this together?

Jennifer: With, I dare say, great difficulty and humility and a whole lot of self-compassion for us, as health professionals, and for any of us with lived experience of the conditions.

It makes me think about potentially what we learn at university and this fixer mindset of someone comes to you with a problem and it's your job to solve it. And when someone comes to you with chronic invisible illness, it's not an unsolvable problem, but it's so much pressure on one human within an ecosystem, within a healthcare system to be the saviour, the fixer, the helper. So I think once we shed that role, and we talk about that at our Connection Medicine course, who are we to actually heal anyone, but could we help someone create the conditions in which to move towards function or something meaningful for the human?

So yeah, I think about maybe those classic protocols, or I'm an exercise physiologist, so osteoarthritis of the knee protocol, maybe all along we were just helping people create the conditions for the body to do its thing, and if we apply that to invisible illness, I think it gives us a lot more breathing room.

I like to be really vulnerable and say, "If I don't know the answer, or I want to find out more, I'm going to ask my colleagues, my connections, the people who I trust in this space or consult the research." And being really transparent about what we might get through in a session and what we might not.

I guess it's good and bad, but in chronic invisible illness, when I say we've got time, we've got time because it's chronic and I value people's time, energy and money so deeply, but I don't feel the six-week rush to recover to get back into, let's say, elite sport or post-surgical rehab guidelines. I actually feel quite expansive, and my hope is that that comes across in the consultation and even in our education piece. The course itself is not... We are not done after the course, we've just begun.

Larissa: Yeah, I love that. Because yeah, I feel like as health professionals we're so often taught that this is the expected treatment timeline for this condition, and as a new practitioner you'll say things like, "Okay, cool, we should be able to get you there in six weeks," and it doesn't happen then you feel this sense of shame and you feel silly.

I have so many friends that are health professionals that are going through this or have been through this. I think even the first thing you said straight off the bat, setting the expectations and just being transparent and being like, I don't know everything and I'll do my best to research things and consult other people. I think even just if we were taught that at university, it would be in a much better position.

Jennifer: It actually would. I love looking back and reflecting on those more painful lessons, I guess, of the times that I, maybe not as much in chronic illness, but just more generalised EP and allied health work. Yeah, you set a goal, you set a target where you should be at this point after X amount of weeks, and then life happens to that person inevitably, and what do we do with that?

So yeah, I feel like quite... I just do not believe anyone that says any of this has a timeframe and an expectation of improvement. It's too variable.

Larissa: Yeah.

Jennifer: Which lightens my load actually.

Larissa: Yeah. And especially for chronic chronic illness and chronic chronic diseases too. I would never expect to go to a practitioner and them say, "Hey, we can cure your Endometriosis."

Jennifer: Yes.

Larissa: But we put that pressure on ourselves sometimes as health professionals. Yeah, I think what you're doing in that space is incredible.

Jennifer: Oh, thank you. I love it. Very fortunate to be able to do it and to use my spoons to do this, so I'm very grateful.

Maddy: So I wanted to know a little bit about how you've consulted with the chronic illness community to help develop resources to educate healthcare professionals about invisible illnesses.

Larissa: Yeah.

Maddy: Because I think what you're doing in that space is, I will even say revolutionary. Yeah, I am just so interested to hear a bit more about it.

Jennifer: I feel like when Flo and I first came up with the idea on the hill and we'd been working in the space, Florence for a lot longer than I had, we actually were just reflecting on what was coming out in this subjective information in our consultations. Even when I see someone now, we might spend a whole session debriefing on some recent medical appointments and making it make sense.

So we had this really rich, but in our brain, qualitative data set of all the things that people had loved, hated, felt misunderstood, felt gaslit in their healthcare journey. Then just because we were trying to build our social media presence at the time, I always say we are a company that just doesn't really love social media, but needs to participate to reach people, so it's a very tricky relationship we have.

But early days, we actually just made a post of, if you're living with chronic invisible illness, what do you wish your health professionals knew? And the answers that came out of that were just moving and sad and hopeful. It was a real mixed bag. And so we always start our weekend course by reflecting. We tend to pick one or two just reading straight from the patient's words to set the tone of what we're going to be working with on our weekend course.

Maddy: Oh, that's fantastic.

Jennifer: The room goes silent. There's a real reverence. Yeah, it's so special. And also because it's pretty much our opening statement after we do an acknowledgement of country and a bit of housekeeping, we then read straight out patient words and people are just in that little awestruck moment.

Larissa: Yeah. I think just including the patients as part of the conversation, because so often that gets forgotten, particularly when there's so many medical professionals involved in the team. Actually listening to the patient and their needs and what they need to feel to feel emotionally safe as a patient too. It's so forgotten sometimes.

Jennifer: Absolutely. And some of the best tips and tricks straight up that I've learned about chronic illness have come from the community itself, whether someone's shared something in a consult with me or obviously there's some amazing social media creators out there that I'm just in awe of the creativity and that knowledge sharing that's really organic and non-patriarchal, non-authoritarian, it's actually a real communal learning, which I think is also super neurodivergent friendly.

It really helps me remember strategies when I think about someone who's tried them and what it was like for them, and then I deliver that to someone else. It's not my knowledge, it's not anyone's, it's all of ours.

Maddy: Yeah. It's that absolute shared knowledge.

Jennifer: Yes.

Maddy: So important.

Larissa: We might jump to a quick ad break and then afterwards we've got some community questions from our lovely Spoony community and we'll be going through those.

Hey Maddy, do you want to know what one of my favourite profile features is on Spoony?

Maddy: That you can use it to post more photos of your dog?

Larissa: I'll take any opportunity I can to post dog pics, but no. Did you know that Spoony allows you to share your support needs on your profile so that your new friends can understand you a bit better? On mine, I've got routines, quiet spaces, energy conservation and visual schedules because we all know how much I love mind maps and naps.

Maddy: That's so cool. Can I put energy conservation there? I have to pace my energy or else I get really exhausted?

Larissa: You absolutely can. There's so many cool profile features that make Spoony unique to any other social platform. You can also display your conditions or illnesses, share your interests, and let people know how your energy levels are tracking by using our signature Spoon Status. I'd really encourage people to check it out for themselves. You can sign up for free using the link in this podcast or you can find us in the App Store or Google Play.

So we're going to dive into some community questions and we reached out to our amazing community to see what they wanted to ask you, and the response was huge. We were quite overwhelmed. We've received so many terrific questions, but sadly we can't ask them all or the episode may never end. But to kick us off, we've got a question from a Spoony users called EldritchOwl and CoCptain. They've asked similar questions and they both wanted to know why EDS and POTS are often comorbid.

Jennifer: Yes. So excited to receive that question and there will be people listening that will be like, "Oh, and this and this." So I'm going to go quite broad and I'll probably will narrow down.

But I guess if we look at EDS, Ehlers-Danlos Syndrome, particularly Hypermobile Ehlers-Danlos Syndrome, we're talking about variants in connective tissue across the whole body. Your very classic presentation might look like hypermobile joints or extensive skin... Elastic skin, gut issues, TMJ, headaches and migraines, we start to really broaden the symptom experience. But more and more we're seeing this co-occurrence of POTS, Postural Orthostatic Tachycardia Syndrome, or someone has POTS and then they go down the EDS rabbit hole and really identify as hypermobile type, and they find that incredibly validating too.

So I guess what I want to make room for here is the fact that there's also connective tissue and smooth muscle inside the blood vessels of the body. So one of the theories around POTS and EDS being interlinked, one of the theories, is that the blood vessels actually have a really high capacity for stretching, particularly the ones of the feet and the lower legs when we stand upright, which is when people can get most symptomatic.

So think about that water balloon image, for people with, if I use the word normal or more predictable blood vessels and dynamics with the nervous system, the blood vessels would squeeze and we would get blood back up to the brain and the circulation. But in EDS we find that there tends to be blood pooling and that can look like discoloration of the feet or heat down below in the feet and the ankles or swelling upon standing, so particularly after something like a shower or being on their feet for a while. There's that stretchy connective tissue theory.

And then I would say even maybe in the last decade, but even more in the last five years, there's been more talk about the intersection of EDS and Mast Cell Activation.

Maddy: Wow.

Jennifer: Which is a really fascinating rabbit hole that I've gone down and I also fully respect that people are way more in the rabbit hole than I am.

But the way I view things is that Mast Cell Activation itself impacts the organisational structure of collagen and connective tissue, so there's a bit of a vicious cycle going on there. And histamine is a mast cell mediator that gets released in MCAS and histamine is vasodilating, which means it opens up the blood vessels.

Maddy: Wow, that is so interesting.

Jennifer: Oh my gosh. I know.

Larissa: Makes so much sense.

Jennifer: When people are having a histamine response, they can be more POTS-y or is this underlying mast cell thing happening in the body, did that happen because of the connective tissue disorder, or is it actually a driving factor back from childhood?

I think as we said, rabbit holes so many of them, but I'm finding that's going a long way to explain or maybe get curious about the interrelationship between EDS and POTS because it's really hard clinically for me to now see one without the other. I just think there's too much overlap.

Maddy: That's absolutely fascinating and I really appreciate you putting it in terms that my non-medical healthcare professional brain understands. Because the research is extremely dry.

Jennifer: Yes.

Maddy: And hard to figure out what it actually means, so thank you for making it so approachable.

Jennifer: Pleasure.

Maddy: We need this information to be as accessible as possible because people are the experts of their own bodies and if they don't have the information to explain it and they don't have a healthcare provider who understands what's happening for them, then yeah, it's just so empowering to have a better understanding of your own body.

Jennifer: It is. And I find that it helps people understand the strategies that we might propose as health professionals rather than this dictating of, "You should do this because it's the recommendation." Imagine if someone understood their histamine, POTS, EDS interrelationship and hey, maybe this strategy works on lowering your histamine intake or wearing compression garments, but actually giving a visual as to why that compression garment helps because it can also be a sensory no for people, but knowing the why behind things I think gives people more of a chance to feel curious and open and try it for themselves.

Maddy: Absolutely.

Larissa: Yeah. So often too, you're just told to do things as a patient and if it doesn't make sense as to why you're doing it, there's no explanation, you're just like, "Why am I doing this thing that makes me feel uncomfortable, or why am I taking this medication?" That patient education is so important.

Maddy: Really is.

Jennifer: It is.

Maddy: So the next question is from SheeBee and CuterThanYou. They had similar questions. They're both struggling with the intense fatigue that comes with chronic illnesses. From personal experience, I think it's one of the worst parts of being chronically ill. And they wanted to know if you have any tips on dealing with that constant fatigue that comes with Fibromyalgia and Long COVID for them specifically.

Jennifer: Yeah. And as we know, so many of the chronic illnesses have fatigue as their cornerstone, but particularly Fibro and Long COVID.

Firstly, I agree, I think fatigue is just one of the most uncomfortable, distressing and invisible symptoms that people experience, because internally you might feel like, "Oh my gosh, it's so obvious. I'm so fatigued. Gravity feels like it's been turned up for me today." And outwardly people might be like, "Hey, you look well," or "It was good to see you. It seems like you're doing really well." So fatigue often doesn't show up, maybe even the same as pain.

And I often hear from clients that you'd rather have none at all I suppose, but people are often like, "Oh, I can cope with pain but I can't cope with fatigue." And I get really curious there about what fatigue is trying to tell us, maybe at a cellular level when we think about things like Long COVID, is there that viral reactivation picture that is just forcing the body into this fatigue state.

And then Fibromyalgia, the fatigue can be really multifactorial whether it's experienced as that brain fog or just the constant sensory input of pain or sleep disturbances in both cases.

So when I work with people with fatigue, I guess it acknowledges the fact that it is debilitating. Sometimes people can push through and then they get a lot more impaired as a result, so it's a real vicious cycle. But where possible, I think that multidisciplinary team can really assist if there is a biological driver of this fatigue, we do need to consider all the systems and their role that they can play. Or is this fatigue telling us that we have pushed through something for far too long, and do we need to adjust our life to match this energy profile, even if it's temporary?

And there are so many barriers like systemic and socioeconomical to making those changes, but the push through pattern, I find it is quite detrimental in the long run.

And maybe anecdotally, and I don't know if it's in the research, but there is such a historical high achiever, caring personality type here, a very bright minded person who somehow gets really susceptible to chronic invisible illness. And I wonder if that sharp adjustment of being able to do everything and then being able to do not much or sometimes nothing, even just that gap must be so distressing. That is a lot of what I work with people on is tolerating or acknowledging the distress with fatigue.

There's no five top tips from me, I suppose, that I hope that that was useful or at the very least affirming to the fact that fatigue is here and if we lean into a little bit of mindset and self-compassion, the phrase, "It's like this," those three words can just really help on a day-to-day basis of wake up with really strong fatigue or post-exertional malaise, it's like this. Because if we fight what is we're going to end up, I would dare say, even more stressed and fatigued in the long run.

Maddy: Exactly. Stress is such a great exacerbator of fatigue, as you would well know. Yeah, it's anything that dials down that stress response a little bit, it's a great way to-

Larissa: Putting that pressure on yourself too. I like the thought of immediately just being like, "It's like this," and just taking that pressure off yourself and immediately alleviating further stress and further fatigue. I love that.

Our next question is from Frog_Biologist, great name. They live with chronic pain and are struggling with sleep, and they were wondering if you have any recommendations to help improve sleep and stay asleep when chronic pain keeps you up?

Jennifer: Well-

Maddy: I've had experiences with that one.

Jennifer: It's so not fair, is it?

Maddy: No.

Larissa: Sleep's so important.

Jennifer: When everyone's like, "Have you tried sleeping?" And you're like, "Oh my gosh, yes, every night."

Larissa: I would love to sleep.

Jennifer: So again, another what I find quite an emotional circumstance is being sleep-deprived and how that interplays with pain and other symptoms experienced.

So something that I do find useful, and I work with people on this idea, and I didn't use to know this until I worked in this space, is that nighttime sleep is built in the daytime.

Maddy: Wow.

Jennifer: I know. Poetic.

Maddy: So poetic. Please tell us more.

Jennifer: By that, I guess we get a chance every morning to tell the body that it's daytime and the way that we receive those cues is ideally, but not always accessible for everyone, is actually seeing the morning light on our retinas and it stops the production of melatonin, that evening is done so the day can begin.

And then ideally if we get some exposure to different environments or fresh air and light, whatever is within capacity in the evening time when the sun goes down, and this is why I guess blue light can be so problematic because it tells us it's still daytime on some level, when the sun goes down, the body will produce ideally melatonin again and get ready for that sleepiness wave.

But more so I guess in something like chronic pain and even living with invisible illness, daytime spikes of adrenaline maybe through overexertion, or I shouldn't say over, just exertion, a painful experience and interpersonal situation can cause those spikes of adrenaline and sympathetic nervous system activation. And we just find more often than not that then that's mirrored in the nighttime. The nighttime might be a broken sleep or really hard to switch off is a common phrase, I would hear, or a 3:00 AM like, "Oh my gosh, adrenaline is here."

So when it comes to strategies to support nighttime sleep, I always look at someone's daytime and trying to make that well-rounded and give us the best conditions, I guess is the phrase, to get ready for nighttime sleep. But also when we wake up at that like 12:00, 1:00, 2:00, 3:00 AM and there's pain present, we often haven't got our full faculties in terms of emotional reasoning and executive function.

And so pain can then become quite distressing because we forget the things we could reach for. So I really recommend people have it... I guess an easy to succeed scenario of if you're a heat pack person, if you're a get up, have a drink of water, try again person, even a medication person that's appropriate for you, having those next to you, just to make it really easy in the foggy brain state, just be like, "Okay, pain's here. I know I'm going to do X, Y, Z, and then I hope that sleep will find me."

And my last little bit about sleep there would be in order to fall back asleep. It's interesting. Some of the strategies that are really calming and relaxing can be really irritating. From my own personal experience. When I used to wake up at 3:00 AM then I would tell my clients, "Have you tried yoga nidra? Have you tried deep breathing?" And I would try that myself and get so peed off.

Larissa: It's so frustrating.

Jennifer: It's so frustrating.

Larissa: The voices just really get to you.

Jennifer: Yes, I'd be thinking about clients, about insert minor drama here in my life. And I learned about myself, and I guess this is where we all have to know ourselves, is that I switch off or I drift off back to sleep if I'm listening to a podcast, it's like conversational but not too exciting for me and not too boring, but just enough of background noise. And then I actually just let myself listen to it rather than, "Go to sleep," put my headphones in. Let myself listen to it, and then I wake up in the morning with my headphone squished into my cheek like, "Oh, it happened."

So I guess there's a bit of acceptance and commitment therapy when it comes to sleep, like an act principle is to let sleep find us and try our very best not to catastrophize. If it's a bad sleep night, it doesn't dictate always the function for the day. It just makes it a little bit harder. Yeah, a lot of self-compassion and a lot of trial and error is my recommendation.

Larissa: Love that.

Maddy: So I loved what you said about the day becoming your night in a way. That is so interesting and not something that I've ever thought about.

Jennifer: Yeah.

Larissa: It makes so much sense though.

Maddy: It does.

Jennifer: It does. The nervous system is just trying to discharge what it experienced and I felt really nervous and excited about this podcast interview, and I wouldn't be surprised if I have a bit of a wakeful night. Or I can, I'm saying... Thinking out loud here, maybe in the evening I have to be quite strategic about really winding down my body in order to wind down my mind because I'm excited, and that's okay as well.

Larissa: Yeah, yeah. That's so true.

Maddy: Yeah, that's such a good point. Our next question is from Creaturee with an extra E, they have Fibromyalgia and are feeling a little bit overwhelmed in figuring out what accommodations would be helpful for college.

That, to me, is so incredibly relatable. It's so hard to, first of all, like contend with having a chronic illness, let alone knowing the answers to what is going to help you in terms of accommodations in work and school and university/college. It's really hard to know what you can ask for and also what will help you. So do you have any recommendations for this?

Jennifer: Well, firstly, good luck at college Creaturee. I'm always in awe and really supportive of anyone who's following an academic pursuit whilst also living with such an invisible set of symptoms and entering a new environment with new people and maybe even having to be a bit assertive and understanding what your needs are in order to then even have them met.

So it is a bit of a practise in, I guess, consolidating and really identifying without the internal gaslighting voice too, which can creep in of like, "I should be fine. Everyone else is fine." Well, maybe they're not, and maybe your accommodations can illustrate to other people, this is what honouring my body looks like. Maybe you'd like to do the same.

So when I work with people on, I guess coming up with a bit of a framework or it's not so much like a request list to the university or college, it's more of a brainstorm, I suppose. I like to divide it into sections, because some of them are things that we, as the person, as the student can take care of, and some things the institution needs to come to the party on.

Firstly, I thought about just the physical body. If being on campus is part of this experience, simple things that we can often overlook. Do you need to bring a portable cushion for your chair if you're sitting in a tutorial room on uncomfy chairs? Do you need access to an elevator to get to your classes? Or a regular change of position, is that encouraged and acceptable in this class format? Could you talk to them about car parking and what that might look like? Could you, where possible, have your timetabling considerate towards your energy and your physical demands?

If this were to be a remote learning environment, I guess we're a little bit more fortunate where we can have a lot of our supports with us in the home, but even just mapping them out and being prepared is really useful.

I always find in any public space, temperature can be make or break, especially for fibromyalgia, so why not consider things like portable heater or heat packs, or a cooling towel if it's a different season for this person. And even though we're speaking about Fibromyalgia here, I think we can't overlook things like sensory considerations and whether those needs are present. So always thinking about noise-cancelling headphones or the ones that can selectively let through some sound and not others. Thinking about maybe not being near a glaring window or even for sound factor for outside noise. Just really positioning yourself in a place that's going to be conducive to learning and ultimately enjoyment. I guess we want to enjoy college and university experiences.

And then academically, this is where the teachers and the lecturers and the university or college really need to be on board. The ability to extend due dates without, let's say, a medical certificate. Having make up classes available to attend or an online version of that. Really looking at the attendance and participation requirements and looking at what might be possible in terms of reducing that load.

Some people find it does help to have longer time available in an examination setting, so if possible, maybe doing the exam in a separate space depending on what the person's triggers are. Thinking about that comfy cushion, for example, or having a longer time just for brain fog and cognitive dysfunction. I think just going in with your maybe worst day needs and then hoping that we might not even need to recruit all of them. But it's easier to subtract them than it is to add them, that's for sure.

Maddy: Absolutely.

Larissa: I love all of those tips. The one you touched on about the time for exams, I've never understood why it has to be all done. I mean, it has to have an end-time frame eventually, but why does it need to be compressed like that?

Jennifer: Yes.

Larissa: It's just so, yeah, just not accessible for so many people to be able-

Maddy: So many people.

Larissa: ... to cram all of that information and then get your thoughts and your brain together to compile it all while you're in an uncomfortable environment. There's so many things like that with university.

I remember at uni, I was given extra accommodations and it was an extra half an hour, and I only got this in my final year. I was put in a room where when everyone else left the exam, they walked through my room and I was like, I actually feel like this is a whole step back rather than an accommodation.

Maddy: Yeah, that's so distracting.

Jennifer: No, thank you. Do I want to sit in the room of shame? No.

Larissa: Yeah. No. But yeah, so many things with unis and schools, particularly what you touched on about lighting and temperature, I feel like they're things these environments just never consider. My experience in uni was bright blaring lights and a really hot room. And having to touch people was an osteopath.

Maddy: Oh, wow.

Jennifer: Yes.

Larissa: Like, oh, so many of these things. I really hope more unis and schools are starting to get on board with this. I would hope so.

Jennifer: Yeah.

Maddy: Yeah, I hope so too. I really feel like what you said about sensory issues too. It cannot be overstated enough. You may have Fibromyalgia, I do as well, but for example, I didn't realise that I had so many sensory needs until you... Remember when you dimmed the lighting, Larissa?

Larissa: Oh yeah. We were having a day.

Maddy: We were having a day, and then Larissa dimmed the lighting in a room and it was like I could actually finally breathe. I didn't realise that was something that I needed because I've never been told that... Because all I was feeling was pain. But on top of that, there was other things that were impacting it, but I just couldn't see because I was in so much pain.

Jennifer: Absolutely. Nearly like, "Thanks for dimming the light. I can hear you now."

Maddy: Yes.

Larissa: And also I should have asked you, but I'm glad it worked.

Maddy: Oh, my goodness. You saw me, like, sink. You're like, "Oh, everything's different."

Larissa: Yeah, we were all a bit overstimulated. I just went... let's turn the lights down.

Maddy: Such a big difference.

Jennifer: I do hope. This is becoming the norm. I have a beautiful client of mine who is in the academic setting, so different side of the fence to the students. They live with POTS and they sit down to lecture, and the amount of people who have come up and said, "I have POTS too." Why do we have to stand sometimes?

Larissa: Yeah. Exactly.

Jennifer: It's so ableist and traditional, I suppose, which we're not about.

Larissa: I actually have a, it's a funny story now, but not at the time. But when I was doing my fourth and fifth year exams at uni, I had undiagnosed POTS, and so for five in a row of my practical exams in a room with my peers and assessor, I passed out in every single one. I had to get picked up by my sister.

Jennifer: Oh my goodness.

Larissa: And every time they were like, "Oh, we'll give you a two-week extension." And obviously there was a factor of anxiety and that type of thing, but it was the same peers every two weeks and they were like, "Oh, do you think you're going to pass out today?" I was like, "I'm not sure. Let's see what happens." I was on the ground at the first question.

Jennifer: Oh my goodness.

Larissa: But all of those things are just, like, I can totally empathise with anyone going through that. And also anxiety exacerbating those things in a schooling or university environment. Yeah.

Jennifer: Yes. Giving oral presentations.

Larissa: Oh, God, yes.

Jennifer: In what world? And if anyone can cope with that, it's not really how work works. It's not really preparing us for the real world.

Maddy: Exactly with those timed exams, that's not really how work is. You don't get a piece of work and then you don't have any laptop or any other resources or anything like that. You can only stay in the same spot, can't go to the bathroom, anything like. That that isn't reality, thank goodness.

Jennifer: Yes, exactly.

Maddy: Rejecting those ableist principles about how you should be working or studying, it is so important. And what you said about your client who's a lecturer and who lectures while sitting down, modelling those accommodations helps so many people. So to Creaturee who's reached out to us, I just want to say, I know it can be really scary asking for accommodations, but if there's something that makes it a little bit easier knowing that you could really help someone else, I hope that that can give you just a little bit of extra courage. But yes, I know it can be really hard, and I hope that Jen's amazing list of incredible accommodations helps you a little bit too.

Jennifer: Absolutely.

Larissa: We've got our lucky last question for today, and it is from WildBuiltRobot, and they were curious to know if you could tell them a little bit more about the similarities and differences between Myalgic Encephalomyelitis, did I say that right?

Jennifer: Good job. 10 out of 10.

Larissa: /Chronic Fatigue Syndrome and Fibromyalgia.

Jennifer: Yeah. I mean, what a biggie to finish on.

Larissa: Loaded question.

Jennifer: I love it. I will start with Fibromyalgia because I'll lead into ME/CFS, but I'm curious if someone out there is living with ME/CFS and you hear these words, I'm going to say to describe Fibromyalgia, you'll probably be like, "Oh, that's me too." And both are possible, and also the intersection is really valid and interesting to me.

Fibromyalgia, we're talking about lots of symptoms, lots of systems, but primarily we've got widespread and localised pain, just because why not have both. Allodynia and hyperalgesia, those phrases refer to when a stimuli is not directly threatening, but it is interpreted by the body as a threat, experienced as pain. So clothing on the skin, sensory inputs coming up as pain. And then hyperalgesia is where something that is actually a slightly threatening or painful stimuli is then even more so, so there's an amplification going on.

Sleep disturbances are really common. I would say probably because of all of the above, gut issues, brain fog, fatigue, headaches. And in Fibromyalgia there is a little bit more evidence and language around this idea of central sensitization, so because of multiple factors, the nervous system has been wound up and is really, it's like a widened receptive field, I guess, to things that could threaten us, and therefore everything I just described is kind of a protective response. So the protective responses really are uncomfortable and painful and not pleasant, but they were there because they detected a threat on some level.

These days, we're also getting really curious around people who were diagnosed with Fibromyalgia, but then learned a little bit more about hypermobility and Ehlers-Danlos Syndrome. I don't know because I'm not a diagnostician and I feel a bit grateful because I don't diagnose, so I can just observe. I wonder if people would meet the criteria, let's say for both, or they would resonate more with Hypermobile EDS, and neither of them have a very clear-cut treatment pathway, so we want to be mindful about the information we take on.

But as I said, if you were living with ME/CFS and you heard that list, you'd be like, "Same." The cardinal feature of ME/CFS is post-exertional malaise. And that is if someone is experiencing ME/CFS after a virus, and the most common one they've found was glandular fever, I always just like to think Long COVID is the ME/CFS of COVID, let's just call it what it is. It wears different clothing, but it is the same thingy underneath.

We need to be really aware of when someone has ME/CFS, they have all those symptoms, and if they exert in a way that is just above the level that the body decides on that day, there can be a delayed but very severe experience of flu-like symptoms. If it was glandular fever, that was one of the triggers, sore throat, tender glands, aches and pains, and just really unwell.

So Fibromyalgia can be experienced as post-exertional symptom exacerbation too, like feeling worse after... The day after a big day. But in my experience it doesn't... If someone's having more of the flu-like experience, we have to really make room for the fact that it's meeting the criteria for ME/CFS. We would call that PEM, post-exertional malaise.

So in a Fibro flare-up, I never want to speak for anyone here, but it tends to be more of the pain and the brain fog and just a feeling of the gut might play up, just all the systems go a bit haywire, and I'm sure you could relate to that.

Maddy: I relate to this hardcore.

Jennifer: Then in ME/CFS that post-exertional malaise or flare-up is a neuroimmune phenomenon where even things like motor skills or there might be tremors on neurological manifestations, not just the sore throat, tender glands, headache, pains picture. You can have both and you can have one or the other, or you can have bits and pieces of everything.

In my experience, people with, if I say just Fibro, I'm assuming that that's just the diagnosis that they have. They tend to respond quite well to movement, and it depends what the triggers are, but stretching and heat and just things that feel safe for that person's unique nervous system and body tend to be quite desensitising. And in the end, we can build capacity through a few more avenues.

But in ME/CFS, we have to just be so careful with movement or the word exercise or physical activity because it's such a clear trigger for PEM, and the coexistence of POTS is extremely common in ME/CFS and to a certain extent, Fibromyalgia as well.

I always think to myself-slash-out-loud, if post-exertional malaise is leaving someone bedbound, and that may last for one or two days or weeks, it depends on the individual, we can't really access the accumulative benefits that exercise had to offer if exercise was the trigger for PEM.

So that's where there's no pushing through. There's no, I think a point in overexertion for exercise sake, let's say, if you're going to have someone rendered really low function as a result. Where did the benefits go and what is that experience like for the human? It would be quite traumatic, I would imagine. And I've heard.

Maddy: As a human who has gone through this, it can be extremely traumatic, especially when exercise is usually the only thing that's... Only treatment that's being offered to people. They say, "Just go exercise, you'll feel better."

Larissa: Wow.

Jennifer: Yes.

Maddy: It's the opposite experience.

Jennifer: Totally. And here's me, with exercise in my job title, or my clinical degree was masters of clinical exercise physiology. Hardly any of these conditions were discussed.

And if I'm working with someone on exercise, it's a very specific... It's requested by the person, and we're having a really thorough conversation, and that's in line with the NICE guidelines that we don't offer it, but if we are asked, we can engage with it in a really harm minimising way. So you can tell I'm very aware and sensitive to the fact that that's why, in my clinical experience, people with Fibromyalgia can access a little bit more movement as a strategy, but not so much with ME/CFS.

But I guess something that really resonates with everything we've spoken about today is encouraging people to know themselves, to know their labels for sure, but then to know their unique nervous systems and their neurotype and what causes them PEM is far more interesting to me than what a dry journal article might have to say, probably written by people who maybe don't have lived experience. I'm really leaning more on the individual's experience these days, and I wonder if you find the same.

Maddy: I think that there's a lot to be said, knowing your body and listening to your body more than necessarily the dry research journals that maybe don't have, as you said, someone with lived experience, or someone with up-to-date information. Because the thing about these conditions are that they have been under-researched for years and years and years. Decades. And so people are only really finding out more information about them as the funding and the research grows.

Jennifer: Exactly. Yeah. There's peer-to-peer learning. I'm a health professional, but I'm also just in it to learn, and if I help the person know their body a little bit more, that doesn't have to match the textbook experience of someone with that condition. I think there's a lot to be gained from that, and I'm glad you've noticed that as well.

Maddy: Yeah, no, absolutely. I feel like if people were only going off what their clinical practitioners, doctors, GPs, all of what they were saying and the research information, then they would be coming up against a lot more barriers than if they were... Like, I've found personally listening to what has helped other people with these conditions has been extremely helpful. Not like, yes, very validating, but also you can take lots of tips and tricks that other people have come up with.

And that has changed my experience. It's still, I will be so real with you, it's awful and it affects me every single minute of every single day.

Jennifer: Yes.

Maddy: Struggling with pain right now, but I think that it can... Just little things can really help you. They might not make your day 20 times better, but they can make your 30 minutes at least 10 times better. And that is really what matters. You've got got to take the wins where you can.

Larissa: For sure.

Jennifer: Yes, and I think that's what Spoony would be amazing for is sharing the tidbits and having that sense of community and belonging.

And I wanted to ask you both before we do wrap up, but as a health professional, how can I support Spoony or share the word or tell my colleagues, for example, what do you think we can do as a health profession group to support such an amazing initiative?

Larissa: Oh, I love that question.

Maddy: Wow, that's such a beautiful question.

Larissa: Thank you so much for asking that.

Jennifer: It feels right.

Larissa: So many different things. The first thing I would probably say would be, as you said, our community shares so many little tidbits and helpful tips with each other, and also just come together to have that community and bond over those shared experiences in a place where they are emotionally safe to talk about it, and feel as though they can unmask, not just from a neurotype perspective, but from a pain perspective.

And I feel like, yeah, working with you guys as health professionals and then our community, I could see our community being a part of that piece of the puzzle, that social connection and that community to lean on.

Jennifer: Yes.

Larissa: Particularly so many people in the chronic illness community, we face so much social isolation. So yeah, I guess, yeah, I feel like we could be a little piece of the puzzle in bringing all of that together and just looking at things holistically too.

Jennifer: Yeah. That's incredibly therapeutic. I'm thinking about how relevant it would be for someone to... Someone who already works with a patient with chronic illness, and even just mentioning the app by name or, "Have you heard of this thing?" I'm thinking of so many people I can just share this with, and facilitate safe social connection with like-minded people.

Larissa: Yeah, absolutely. One of our features that we've actually just shipped is our Spoony Match feature.

Jennifer: So cute.

Larissa: So you're able to match with people who might share the same diagnosis as you. What I think is so cool about Spoony too is typically friendship, or in the dating world, we're not putting our diagnosis. It's like an afterthought and we don't want to tell people, whereas on Spoony, someone's diagnosis is on their profile if they want. So say you had POTS, you could really quickly see that you can match with someone with POTS and open up that conversation.

Whereas I guess in the real world, you might not divulge that you've got a chronic illness to someone for a long time. So just having that safe space is something, yeah, we feel very strongly about and yeah, I can imagine, yeah, patients being directed to Spoony, hopefully they'd have that experience.

Jennifer: Yeah. Oh, that's so great.

Maddy: I can imagine if I had been told, "Hey, here's an app where you can meet other people who have this condition, and you can just... When you're bedbound and not able to leave your house, if it... Doesn't take too much spoons, you can go on your app and you can chat to people all around world who have this condition." I think that would made my life completely different. And I think I would not have experienced as much loneliness as I did when I was first diagnosed and first trying to figure out all of it.

But also I feel like there's the loneliness that comes when you're diagnosed, but it also continues because this... It feels like a bit of a solo journey being chronically ill, especially with these invisible conditions. And so knowing that, hey, you can reach out to the other people who are journeying on their own horrific and ups and downs of chronic illness, that is so wonderful to know, "Hey, I can reach out to this friend who is also struggling," and they can get back to me when they have the spoons, but hey, they've passed on some great tips about you can sit down to unpack the dishwasher. What the heck? I share that because that is a tip that changed my life. I know it doesn't sound revolutionary.

Jennifer: But those are the ones that matter.

Maddy: For sure.

Jennifer: I mean, I work on those type of modifications, but you forget the ones that you could really do.

Maddy: Exactly. You can sit down and fold the washing. What?

Jennifer: Yes. Thank you.

Larissa: I feel like it's also important, you can jump into online forums and Facebook groups with people with the same illness as you. But where we're a little bit different too, is having that structured space and not letting... My experience in some of those forums is like gaslighting or unpleasant behaviour or a lot of medical misinformation. And ultimately, I've left those groups because the community I was seeking was not there.

So yeah, we do put in a lot of effort to make sure that Spoony is a safe place and the right place for people to come to as well.

Jennifer: It's a credit to you both, and I know there's a bigger team as well behind the scenes, but it's just amazing. Thanks for sharing that too.

Larissa: Thank you.

Maddy: And thank you so much for joining us and all of the amazing work you're doing with Invisibly Brilliant and Connection Medicine. Wow, you really are changing the world for chronically ill people. So I just want to say thank you so much. When I found out about all the work you were doing, I was like, "We need Jen on here. She's a game changer." Game changer meets fellow game changer, maybe?

Jennifer: I think so. Magic happens, Maddy.

Maddy: I think so.

Jennifer: More than happy for a round two anytime.

Larissa: Absolutely. I would love that.

Maddy: Thank you. Oh, that would be amazing. Thank you so much.

Jennifer: My pleasure. Thank you both.

Larissa: And where can people find you as well?

Jennifer: Yeah, this is that classic business that has social media, so I will give you the handles to put in-

Larissa: Show notes.

Jennifer: ... there's invisiblybrilliant.com.au is my clinical website and then connectionmedicine.co, fun little ending there, is Connection Medicine's website. But I won't try and imagine what I've called the social media accounts.

Larissa: That's okay. That's all good. We'll pop them in the show notes for our listeners.

Jennifer: Thank you. Thank you everyone for tuning in. It means a lot.

Larissa: Thank you. Thanks, Jen.

Maddy: And thank you so much to the community for just being so excited. It means the world that you are able to share some of the questions that I'm sure have been bubbling in your heads for a while. It can be scary to reach out and ask for help, but yeah, I really hope we can do more of these because I think why not feel safe in Spoony, and feel safe to share questions that you have? Because we're going to get you the answers. Or try our very best.

Jennifer: Yes, yes.

Larissa: Thank you.

Jennifer: Thank you so much.

Larissa: Awesome.

Maddy: This podcast is brought to you by Spoony, a safe space for neurodivergent, chronically ill and disabled people to make friends and find support. Spoony is the world's very first social app designed with accessibility at its core.

If you liked this episode, it would mean the absolute world to us if you could hit subscribe, or share it with a friend. If you'd like to join our Spoony community, you can download the app on the App Store or via Google Play. And if you'd like to keep up to date with us on social media, you can follow us via the links in the show notes.