Ehlers-Danlos Syndrome & Neurodivergence: Living with Invisible Illness, Pain & Burnout

Summary

Podcast Summary: The Neurodivergent Experience

Episode Title: Ehlers-Danlos Syndrome & Neurodivergence: Living with Invisible Illness, Pain & Burnout
Release Date: August 27, 2025
Hosts: Simon Scott (solo this week), Jordan James (away), Guest Co-Host: Ashley Bentley (Hypnotherapist, Breathwork Practitioner)

---

Overview

In this candid and eye-opening episode, Simon Scott is joined by Ashley Bentley to explore the intricacies of living with Ehlers-Danlos Syndrome (EDS)—a complex, largely invisible connective tissue disorder—and its significant overlaps with neurodivergence. Together, they unpack the medical, psychological, and lived experiences of managing EDS, chronic pain, fatigue, and the compounding effects of burnout within the context of autism, ADHD, and related conditions. The conversation is rich with personal stories, practical advice, and validation for anyone navigating hidden disabilities.

---

Main Discussion Points & Insights

1. What is Ehlers-Danlos Syndrome (EDS)?

[04:42] Ashley Bentley:

• EDS is a group of 13 connective tissue disorders affecting collagen, the 'glue' that holds the body together.
• The most common type is Type 3, hypermobility EDS; diagnosis is subjective and relies on flexibility tests (Beighton Score) as no definitive genetic test exists.
• EDS affects joints (leading to dislocations, pain), gut, skin, and more—often presenting as a collection of mysterious, unexplained symptoms.

“It’s largely an invisible illness, which can make things very difficult…People may look healthy, but inside we’re often navigating a much heavier load.”
—Ashley Bentley [06:58]

2. Invisible Illness and the Neurodivergent Experience

[07:17] Simon Scott, [07:50] Ashley Bentley:

• The pattern of EDS being misunderstood or 'invisible' parallels the broader experience of neurodivergence.
• Emotional and physical boundaries blur: “Isn’t it interesting that people with poor boundaries physically often also struggle with emotional boundaries?” (Ashley, [08:25])
• Invisible symptoms make medical validation difficult, often leading to dismissal.

3. Comorbidities and Overlapping Conditions

[09:34] Ashley Bentley:

• EDS often co-occurs with POTS (Postural Orthostatic Tachycardia Syndrome) and Mast Cell Activation Syndrome (MCAS).
• These issues can be mistaken for or overlap with neurodivergent traits (insomnia, anxiety, sensory issues), creating diagnostic confusion.

4. Personal Stories: Path to Diagnosis

[11:50] Ashley Bentley & Simon Scott:

• For Ashley, EDS diagnosis came before her autism diagnosis, and research into EDS led her to discover her neurodivergence.
• Both share stories of childhood injuries, mysterious pain, and chronic fatigue—realizing only in adulthood that these were not ‘normal.’

“My whole life I suffered with all sorts of strange physical symptoms that nobody could kind of connect and put together.”
—Ashley Bentley [13:12]

• Reflection: Many listeners (and Simon himself) realize in real-time that symptoms dismissed in their youth align with EDS/neurodivergence.

5. Understanding the Body-Mind Connection

[19:25] Ashley Bentley:

• Faulty connective tissue results in muscles overcompensating, leading to chronic fatigue and constant ‘high alert’ in the nervous system.
• Burnout is compounded when both neurodivergence and EDS are present, making physical and emotional recovery more complex.

6. Nervous System Regulation & Somatic Tools

[26:35] Ashley Bentley:

• Breathwork, somatic experiencing, and nervous system regulation are foundational for healing.
• The body stores trauma (“the body keeps the score”), which is particularly relevant as both neurodivergence and EDS have high rates of PTSD.

7. Invisible Disabilities and Social Implications

[34:32] Simon Scott, [34:42] Ashley Bentley:

• Difficulty accessing appropriate diagnosis and support; even specialists may not connect the dots unless prompted by the patient.
• Self-advocacy is crucial. “We’re known as zebras in the medical community… Every so often you hear hooves and it’s a zebra.” (Ashley, [36:10])
• Misdiagnosis and dismissal are common, especially for women and marginalized groups.

“Community, knowledge, self-advocacy seem to be the only thing we can rely on… It frustrates me how someone like you had to have so many variables to get your diagnosis.”
—Simon Scott [38:10]

8. Navigating Burnout, Fatigue & Daily Life

[45:40] Ashley Bentley:

• Severe flare-ups can force major lifestyle changes—cutting back on work, social life, and even basic activities.
• The struggle of “not looking disabled” leads to imposter syndrome and invalidation.

“It is so, so difficult because people think they’re being helpful…you look great, what are you talking about? It’s a real test of radical acceptance.”
—Ashley Bentley [48:59]

9. Support Systems, Communication & Accommodation

[53:48] Simon Scott:

• Open communication and creative problem-solving with loved ones are vital. Simple changes in language or routine by partners can make life more accessible.
• Example: “Would you be able to do me a big favor?” as a way to mitigate PDA (Pathological Demand Avoidance).

"Creating those sorts of connections with my support circle… now I don’t always have to do the work alone."
—Simon Scott [52:15]

10. Spoon Theory and Practical Coping Strategies

[59:04] Ashley Bentley, [61:09] Simon Scott:

• Spoon theory is a visual metaphor for managing limited energy. Simon approaches 'spoons' like currency, budgeting energy before and after major events.
• Planning rest and accommodations for aftermath is essential: lower expectations after big days.

"I treat it like currency… if I’m asking for two [spoons], I make sure I already have two to give later on."
—Simon Scott [63:08]

• Gratitude practice: Thanking ‘past self’ for setting up future rest or organization.

11. Exercise and Physical Health with EDS/Hypermobility

[66:33] Ashley Bentley:

• Strengthen muscles deliberately to support faulty collagen, but never work to failure—low reps, focus on condition-specific modifications.
• Supplements may help, but require professional advice.

12. Self-Awareness, Compassion & Rewriting the Narrative

[72:08] Ashley Bentley, [73:41] Simon Scott:

• Reframing past self-criticism: “Look how well I have done… without a diagnosis.”
• Compassion, validation, and learning to like oneself come from understanding personal needs and explanations, not excuses.
• Community, education, and self-acceptance are ongoing gifts of embracing neurodivergent and disabled identities.

“Having awareness and learning who you are is probably the greatest gift from this whole experience…It’s not an excuse, it’s an explanation.”
—Simon Scott [74:45]

---

Notable Quotes & Memorable Moments

• “Isn’t it interesting that the psychological profile… a physical condition would have a psychological profile that goes alongside it?”
  —Ashley Bentley [07:50]

• “Every day is a school day moving forward. But when I reflect on the past, things just reveal themselves as I learn more about myself.”
  —Simon Scott [14:07]

• “Chronic hyperarousal leads to insomnia, which also leads to anxiety and burnout. I had one client say to me, ‘It feels like my body never lets me rest.’”
  —Ashley Bentley [31:44]

---

Key Timestamps for Important Segments

• [04:42] What is Ehlers-Danlos Syndrome (EDS)?
• [11:50] Personal stories of discovering EDS and neurodivergence
• [19:25] How faulty collagen affects energy and the nervous system
• [26:35] Somatic regulation, trauma, and EDS/neurodivergence overlap
• [34:42] The "zebra" metaphor, medical skepticism, and self-advocacy
• [45:40] Daily life restrictions and fatigue with EDS
• [53:48] Partner accommodations and communication strategies
• [59:04] Spoon theory in practice
• [66:33] Safe approaches to exercise and muscle strengthening

---

Conclusion: Empowerment & Takeaways

This deeply validating episode underscores that invisible illnesses like EDS frequently intersect with neurodivergence, requiring a holistic, compassionate approach to health, support, and self-perception. The hosts offer hope, practical strategies, and a powerful call for radical acceptance—within ourselves and in our communities.

Final message:

"It’s not an excuse, it’s an explanation. And being kinder to yourself is the greatest gift of understanding who you are."
—Simon Scott [74:45]

---

Resources Mentioned

• Beighton Score: Tool for assessing hypermobility
• Somatic Experiencing: Therapy for body-stored trauma
• Spoon Theory: Framework for managing energy in chronic illness
• QSAC Protocol: Supplement approach (seek professional advice)
• Jenny Debon: Physical therapist specializing in EDS (find online resources)
• "The Body Keeps the Score" by Bessel van der Kolk: Book on trauma and the body

---

For support or to work with Ashley Bentley, see episode links and description.

Remember: Your experiences—even if invisible or misunderstood—are real and valid. You're not alone.

Transcript

[Ashley Bentley]

Only Boost Mobile Boost Mobile will give.

[Simon Scott]

You a free year of service.

[Ashley Bentley]

Free year when you buy a new 5G phone.

[Simon Scott]

New 5G phone enough. But I'm your hype man. When you purchase an eligible device, you get $25 off every month for 12 months with credits totaling one year of free service. Taxes extra for the device and service plan. Online only.

[Hannah Burner]

This is Hannah Burner from Giggly Squad. Opill is the first over the counter daily birth control pill available in the us. Let's be real. Getting a birth control prescription is not always easy and it's so much admin. In fact, about a third of women face barriers to access prescription BIR control. Between scheduling appointments, missing work class or just trying to exist, it's a lot. But now Opill is putting birth control in our control. OPILL is a daily birth control that's FDA approved, full prescription strength and estrogen free and 98 effective when used as directed. Grab it online or at most major retailers. No prescription or doctor's appointment needed. So if you're thinking about birth control, check out OPILL to see if it's right for you. Use code giggly for 25 off your first month of opill at O-P-I-L-L.com that's code gigglypill.com birth control in your control. We love to see it.

[Simon Scott]

Today we'll attempt a feat once thought impossible, overcoming high interest credit card debt. It requires merely one thing, a SoFi personal loan. With it you could save big on interest charges by consolidating into one low fixed rate monthly payment. Defy high interest debt with a Sofi personal loan. Visit sofi.com stunt to learn more. Loans originated by SoFi Bank NA member FDIC terms and conditions apply. NMLS 696891 welcome to the Neurodivergent Experience Podcast. A podcast where we share the lived experiences of neurodivergent people to help create a better understanding for our community. Join us every week as we bring you honest, raw and inspiring conversations with specialists, advocates and individuals who know exactly what it's like to live the neurodivergent experience. I'm Jordan James, a neurodivergent specialist, father of neurodivergent children, husband to a neurodivergent wife, and author of the Autistic Experience. And I'm joined by my best friend. I'm Simon Scott. I'm an autistic ADHD broadcaster, actor and advocate. Join us as we journey into unraveling the neurodivergent experience. Hello hello, welcome back to the Neurodivergent Experience. Yes, this is Simon Scott, I'm the other one. Jordan James isn't here this week. He's currently on a bit of a photography break. So look forward to seeing all of his wonderful pictures when he comes back. So I'm not riding solo as always. I will be with a co host and I've got a wonderful one for you. This week I am joined by hypnotherapist, breath work practitioner all round incredible human being, Ashley Bentley, therapist of the show. Thank you so much for stepping in. I'm really excited to just sort of just hang out with just you today. Even though as much as I love Jordan, I'm kind of just looking forward to just having a bit of a one on one time. So how are you?

[Ashley Bentley]

Absolutely, yeah, I'm doing really well, thanks. Doing really well. We've had a little bit of a heat wave here on the Isle of Man this past weekend, so I've just been enjoying the nice warm weather and yeah, I'm really excited to be talking today about a topic that I think is going to be very, very important to cover for us neurodivergent folks out there.

[Simon Scott]

Yeah, so this is a topic that, you know, you'll know this, Ashley, because you know me well, but maybe the listeners, not so much. If you're joining us just a few episodes in or if this is indeed your first episode joining us. I am a relatively newly diagnosed neurodivergent person. I feel like I am so starting to enter the community, enter the sort of space and I'm realizing that there is so much more to being neurodivergent than just the sort of the Mount Rushmore of, of our things, you know, autism, adhd, ocd, like the things that we sort of go, I've heard of those now, Ehlers Danlos syndrome, I have no knowledge of absolutely. At all. I don't know the symptoms, I don't know what causes it. I don't even know what it looks, sounds or feels like. So today is a real sort of, you know, EDS 101 for Psy. So Ashley, I'm gonna sort of let you take it away. What is EDS?

[Ashley Bentley]

Right, so there are 13 subtypes of EDS just to make things nice and complicated to start off with.

[Simon Scott]

We love a subcategory in the neurodivergent community, don't we? We can'. Fit it into one.

[Ashley Bentley]

Absolutely. But most people are subtype 3, which is the hypermobile type of Ellis Danlos and unfortunately it's the only one that there at present, there is no actual test that you can take. There's no genetic testing, there's no blood test. It's all done through seeing how flexible you are. The Beighton score is sort of the hallmark of hypermobility. And that just looks at how stretchy you are, which as you can probably already determine that it's not. That can actually be quite subjective. It can be quite difficult to get diagnosed. We can go into that in a little bit. But it affects the connective tissue within our bodies, and connective tissue is in everything. It's basically the glue that holds the body together. So when collagen doesn't behave like it should, the body feels unstable. So that can mean easily dislocated joints or if somebody is maybe not dislocating, but maybe is just super flexible in their joints. But it also affects things such as the gut. So there are a lot of gut issues. There's a lot of chronic pain, a lot of fatigue. And so it often shows up as these seemingly sort of very different mysterious symptoms that don't seem connected, but they actually are. And a lot of times doctors, you know, can't really explain what's going on because at one point, up until recently it was considered quite a rare condition. But it's amazing how much like autism is finally getting diagnosed more and understood more. I think the same is happening with Ellis Danlos and hypermobility. And so, yeah, it's largely an invisible illness, which can make things very difficult too, because people just say, well, you look fine. And it's like, oh, but you have no idea what my lived experience is. So people may look healthy, but inside were often navigating a much, a much heavier load.

[Simon Scott]

And isn't that just the neurodivergent experience, Ashley, sort of what you've explained. There you go. Oh, there are these common symptoms that seem to have reliance with many other things. We tie it together, but yet doctors can't seem to recognize the patterns that it's all universal. And the fact that you said as well, oh, we know that this thing exists, we recognize symptoms, it has a name. We don't know how to test it. Then how do you know that it like this is the contradiction of the. Just the whole medical sort of analysis of neurodivergence is just. This makes my head just explode.

[Ashley Bentley]

I know, I know. This is yet another example. You're so right. There's so many interesting things about how like the, the literal, the physical is, is mirroring how we describe the the metaphorical and the emotional. Oddly enough, my best friend also has Ehlers Danlos syndrome. She got. She got diagnosed before I did, and she has very different symptoms. Again, you know, it just. It's. It. It's almost like a spectrum within. Within Ellis Danlos. But. But she made the very interesting point about how. Isn't it interesting that the psychological profile. And this is what we're. We'll discuss today as well, which is so interesting. You wouldn't think a physical condition would have a psychological profile. Go. Go alongside it, but it does. And. And my friend made this assertation that. Isn't it interesting that the people with poor boundaries with other people. You know, we talk about asserting healthy boundaries a lot psychologically these days, which is great. But our own physical, like our bo. It's like our bodies don't have proper boundaries. Boundaries with others emotionally is almost kind of mirroring in our bodies. Our bodies can't. Don't have. Our bodies have poor boundaries.

[Simon Scott]

It's almost like they're intrinsically connected, isn't it, Ashley? This is what always amazes me when people kind of go, oh, the mind and the body just aren't. Like the brain is just controlling a meat mech. It always amazes me how people don't make the connection with the stomach and the brain or, like, the use of, like, tendons and just mobility. And there's so much more than just your bones, your organs going on inside.

[Ashley Bentley]

Yes, yes, absolutely. Absolutely. And much like we were talking about, you know, with autism and ADHD and OCD and dyslexia, there's kind of. There's also a similar thing with Ellis Danlos. So there's. There's common comorbidities of pots. So that's P O, T S. And I always screw up pronouncing the long. It's like postural or. Yeah, I'm not gonna.

[Simon Scott]

Postural orthostatic tachycardia syndrome.

[Ashley Bentley]

That's it. That's the one. I'm gonna leave that one to you.

[Simon Scott]

Oh, good. Thank you.

[Ashley Bentley]

That's your job. And then another one is mast cell activation syndrome, which is also known as MCAs. So that. Those are histamine issues where we have an overproduction of histamine, and that doesn't necessarily mean allergies. Histamines can be overactive in the blood. It crosses the blood brain barrier. It can keep us from sleeping. Well, again, this. You know, so this. This. This poor sleeping, as we. We spoke about the other week, is a hallmark. Can be a hallmark of being autistic, but it can also be a hallmark of having Ehlers Danlos syndrome. So these and the POTS is really related to dysfunction within the autonomic nervous system. So it's very, very complex and very difficult to navigate how to best look after yourself. But that's something we can talk about later on today as well. But you might be interested to know how I came to know that I had Ehlers Danlos syndrome.

[Simon Scott]

Yeah. How did it sort of reveal itself to you? Because I'll be honest, Ashley, as you're sort of listing off some of these symptoms, these are part of my everyday life.

[Ashley Bentley]

Yeah.

[Simon Scott]

Especially like hypermobility in joints, fatigue. What I sometimes feel is like high end anxiety that originates in the stomach, which almost feels like a histamine sort of reaction to just life in general.

[Ashley Bentley]

Yes.

[Simon Scott]

So I'm interested, how did you become aware of having eds? What was it for you?

[Ashley Bentley]

Well, I first found out I had EDS before I found out I was autistic. So this, this overlap and really, yeah, it was Ehlers Danlos that first made me realize or that I first started hearing that there was an overlap with being autistic. And I remember initially just feeling at that point, this was 2019, I had a very outdated. My scope of information in terms of being autistic was just. I knew very little.

[Simon Scott]

You're not alone with that, Ashley.

[Ashley Bentley]

Yeah, yeah. I just had very, very incorrect information. So I initially just dismissed it. I thought, well, no, that's not going to be me. But then the more I started to research Ehlers Danlos syndrome, the more I started to see this popping up and then I started to see how it, how it can present differently in women. So this is what led me to find out I was autistic. So, yeah, there's a real overlap between autism and Ellis Danlos and hypermobility. My whole life I suffered with all sorts of strange physical symptoms that nobody could kind of connect and put together. So constantly dislocating shoulders was a big one for me.

[Simon Scott]

Oh, goodness me.

[Ashley Bentley]

Yeah. And then I finally had surgery on my right shoulder in 2011. They ended up. Normally they did keyhole surgery. And normally I was expecting to be in and out and back to work a few days later because most of the time what they can do is just tighten up the tendons. But I woke up and I was like, the doctor came and said, yeah, basically all your tendons were shredded. There was nothing viable to like, basically there was nothing holding my arm into my socket. So they had to put in four plastic anchors so there's got these anchors.

[Simon Scott]

That are essentially a hip replacement in your shoulder.

[Ashley Bentley]

Yeah, yeah, basically. And that lasted for 10 years until I. Again, 2019 was kind of a big year for me. Everything just kind of came crashing down on my health and, and, and. And it just popped out one day. So I had 10 years of it staying in, or eight years of it staying in. And then. And then a week later, I dislocated my knee. And so.

[Simon Scott]

And.

[Ashley Bentley]

But it was all very tied to chronic stress. And again, this autonomic dysregulation and extreme, extreme burnout, and all of these things began sort of cascading. So, yeah, a lot of you out there might be thinking, gosh, some of these things are sounding like yourself. So you've experienced hypermobility.

[Simon Scott]

I have hypermobility. I've got, like, extreme sort of flexibility in my hands.

[Ashley Bentley]

Yeah.

[Simon Scott]

I have always really struggled to hold a pen for more than half an hour. I get incredible, like, cramp in my sort of hands and wrists. I've always been able to sort of, like, move my elbows sort of like 90 degrees, sort of angles. But one of the things that this makes me sort of, you know, this is the fascinating thing about my sort of journey, Ashley, is every day is a school day, moving forward. But also when I sort of reflect and look on the past, like, things just reveal themselves as I learn more about myself. And when I was younger, around sort of five, six years old, I just had incredible weakness in my knees overnight.

[Ashley Bentley]

Oh, wow.

[Simon Scott]

So I had sort of like, an issue where I was in the hospital where I essentially had meningitis, and I was very ill for, like, two, three, four days. Had like, extreme dehydration because of the medication. And about a month or so later, my right leg just stopped working in that. My knee was just very weak and would sort of like, my feet were coming out in front of my knees, and my parents were really worried that I was going to have to have knee braces. And it sort of just rectified itself with hydration and a lack of stress upon my brain, my body, inflammation, everything like that, which makes total sense to me. I'm literally realizing this as I'm talking to you.

[Ashley Bentley]

Yeah.

[Simon Scott]

But I have sort of had chronic pain in my knees all my life. And it's always associated with moments when I'm really stressed or fatigued or I feel very fragile. Like, I've had a popping in my rotator cuff since I was about 9, and I can tell you the exact moment when it happened. I was Playing cricket at school, I went to reach for a ball. I overextended and I felt a twinge and a pull and a pop and it sort of went oh. And kind of just clicked back into place. But now it still clicks. I still have this sort of like clicking rotation and stress sort of comes in my neck as well. And I find I can really pop my neck quite loud. I have like a lot of escapes of air. And like when I lived in London and was extremely just burnt out just from just living in, you know, the capital city of the country, my feet were so sore, Ashley, all the time. Like my big toe just felt like it was constantly like rock solid and I had to really like crack it open in the morning because I was on my feet all the time. It's constantly pressing into the ball of my feet and I no point did I ever associate that with more than just being tired.

[Ashley Bentley]

That's just it, you know, we can't know how other people are feel. So all we know is our own experience. So it sounds like that thing with your rotator cuff, it sounds like you likely had a subluxation. So not a full dislocation, but a slipping and it probably slipped out and slipped right back in. And that was the first thing that happened when I was swimming once when I was a child. But also with your Knee Being age 5, it's so interesting. So there is a gene theory out there of the RCCX gene theory. There's a great Facebook page and a website that is trying to find a genetic test for this so that we can. But the doctor who's put this together made some very interesting sort of observations. And one of those, usually by age 5, which is when you had your knee issue, that's when the amygdala in our brain, the fear center in our brain, becomes what's known as what she calls a brain wired for danger. So the amygdala really, really comes online and grows rapidly. And a lot of times a virus, an illness can trigger this sort of extra sort of signals within the body of danger. So you have this, you had this sickness followed by this issue with your knee. That all makes sense, but I'm glad to know it sounds like, you know, you were well looked after and you were able to sort of rehabilitate. But what's going on with our muscles and the autonomic nervous system and why it's so difficult, why we're so exhausted and fatigued, is that because our tendons and ligaments are what are supposed to be holding our body together. Okay.

[Simon Scott]

It's the hydraulics of the bone, isn't it? Yes. Yes.

[Ashley Bentley]

Yeah. So they're supposed to be really taut and tight, like a coiled spring. But with Ellis Danlos and hypermobility, they are more like rubber bands. So what is holding us together is our muscles. Our muscles are holding us together, and that's a big job to do. So basically, our muscles are just constantly activated, and that's constantly sending signals to our nervous system that we're not safe. And so this is why there's so much fatigue and so much tendency towards burnout, because our poor muscles are trying to do the job of all of our tendons and ligaments as well as doing their, you know, their normal job.

[Simon Scott]

And so much comes from that. I mean, I've learned recently because obviously, as life sort of revolves, I ended up having an injury on the same leg as I got older. I fell off a. A scooter when I was, like, 13 or 14 and had, like, a hairline fracture and a bit of, like, cartilage come out and things like that. And afterwards I have realized the muscle atrophy that I had on my leg has caused so many issues on the other one because it's so overworked.

[Ashley Bentley]

Yeah.

[Simon Scott]

And obviously, I know a lot of neurodivergent people seem to lean to one side naturally, don't we?

[Ashley Bentley]

Yeah.

[Simon Scott]

You know, your head seems to fall one way is like a relaxer. I have had to really work on developing my left shoulder simply because I had permanent chicken wing for years. That was sort of my, like, anxiety response to put my hand on my chest with my left arm and be very, very tight in this sort of deltoid pec space to the point of I had a sort of very short tendon. So I've had to really work on stretching it out and leaning into the wall and things like that to really open this space up. And it's only now at 31, that I've sort of. Well, it's not that I'm less anxious. I'm just sort of more aware of my anxieties and sort of work through it. But exercise has been so key to my physical and mental health.

[Ashley Bentley]

Yes.

[Simon Scott]

But at the same time, I am very afraid of hurting myself, Ashley. Just instinctively. Like, I don't go on treadmills because I'm so afraid of that sort of, like, impact feeling of bone on bone. If I really feel it internally.

[Ashley Bentley]

Yeah, yeah, well. And pay attention. I felt that too. I can remember growing up and, you know, my whole family was into fitness and aerobics. You know, I was in the age of the 80s and Jane Fonda and all that and going to aerobics and jumping around and it felt so wrong. But nobody knew what was going. So it was like, oh, Ashley's just being lazy or what have you, or. And so. But little did I know what was. And no, nobody in my family knew. So, you know, we can't know what we don't know sometimes. But yes, high impact is you just want to. Yeah, leave to the side. You know, walking, walking is great and strength training, but strength training in the right way and stretching in the right way. It's so easy to overstretch. So we can really go into some practical ways to strengthen your body later on in the episode when we, when we discuss how to best look after yourself, because it's really, it's really crucial.

[Simon Scott]

Absolutely. I think this is a good time to take a break, but when we come back, I want to dig deeper into sort of how this overlaps with neurodivergence and as well, something that I am really learning to have a relationship with, which I would love to discuss is nervous system regulation.

[Ashley Bentley]

Yeah.

[Simon Scott]

So we'll be right back after this.

[Ashley Bentley]

Only Boost Mobile.

[Simon Scott]

Boost Mobile will give you a free year of service.

[Ashley Bentley]

Free year when you buy a new 5G phone.

[Simon Scott]

New 5G phone, enough. But I'm your hype man. When you purchase an eligible device, you get $25 off every month for 12 months with credits totaling one year of free service, taxes extra for the device and service plan online only. This episode of the Neurodivergent Experience is brought to you by RTN Mental Health Solutions, with up to a five year waiting list for autism and ADHD assessments via the nhs. And that's even if you get a referral from your gp. Getting an assessment in the UK has never been harder. So if you're like me and can't wait anymore, going private may be the best option for you. RTN offers online assessments for kids aged six, right up to adults. To make it more accessible, RTN can offer payment plans up to five months. You can access their remote services from the comfort of your home anywhere in the uk. And RTN offers group and one to one counseling, a private route to access ADHD medication following the assessment and will even fight for you if your GP doesn't accept the results. So if you live in the UK and can't wait to get an assessment, go to www.rtnmentalhealthsolutions.com and use the discount code RTN23, making it even more affordable for all of our listeners to get an autism and ADHD assessment. Welcome back to the Neurodivergent Experience. Simon Scott. Just flying solo this week without Jordan, but I am joined by the wonderful Ashley Bentley and we've been having, from my perspective anyway, a rather eye opening conversation about Ella's Danlos syndrome or eds. Before the break we were touching on how this sort of has high overlap with neurodivergence. Ashley and one of the things that I'm sort of really sort of understanding myself as like a newly diagnosed welcome to the community sort of person is my sensory sensitivities. So how does eds, where is the overlap with the two there?

[Ashley Bentley]

Well, you've got prior pro pryoception issues so, so noticing that's, that's the brain understanding where, where your body is in space. And again, because these signals can be quite, you know, if we're, if our muscles are doing the job of our tendons and ligaments, that's going to be putting the nervous system on high alert which means our threat detection goes up, which means a lot of our, the way that we experience the world becomes very dysregulated. So clumsiness. Yeah. Again that sensory overload with the nervous system you're going to be more sensitive to light and sounds and you're going to be jumpy because your body is really in this heightened state of awareness because the body isn't working in the way that it's designed to work really with this faulty collagen that is in everything. It's in our bones, it's in our skin, it's in our organs, it's in our teeth, it's just in everything.

[Simon Scott]

You can understand how that could have a real impact on your nervous system.

[Ashley Bentley]

Yes. So, yes. So if you think about it, our muscles are doing the job of our tendons and ligaments. So they're always on, they never get a chance to really rest. And this is the thing, you know, you can, you can. So you've got to really look at learning how to. Nervous system regulation was the very first thing that I did my deep dive into to be able to help myself get better. And this is why it is, is one of the hallmarks of what I do in my work. You don't need to have Ehlers Danlos syndrome to prioritize the health of your nervous system. It's affecting all of us out there. Neurodivergent, neurotypical, everybody. But if you are neurodivergent and if you are hypermobile, if you do have, or you have any other sort of chronic illness, your nervous system is going to be just so on high alert. When we are neurodivergent, we are consciously taking in more of the world in any given moment. So that's automatically going to put us on higher alert. And if we are hypermobile or have Ehlers Danlos or chronic illness, we're also going to be even more on high alert because our body's not feeling safe. So learning how to regulate your nervous system through the breath through somatic, different somatic tools. And there's all sorts of wonderful different somatic tools that we can use out there. There's even a whole psychological. There's something called somatic experiencing, which is going to see a somatic experiencing therapist where you are dealing with your trauma, your emotional issues, at the same time dealing with where it is being stored in your body. So that can be very, very effective as well, because we know from the amazing studies by Bessel van der Kork with the Body Keeps the Score, we know that we store trauma in the body. And if we are, you know, we know the prevalence of PTSD within the neurodivergent community is, is very, very high. And also this is the interesting thing about the psychological profile of those with Ehlers Danlos syndrome. PTSD is through the roof as well. So for those of you out there, I would imagine there's a lot of people out there that may not realize that they have one or the other. A lot of autistic people not realizing they may have hypermobility or Ellis Danlos syndrome. And conversely, a lot of people with hypermobility and Ellis Danlos syndrome might not realize that they are, that they might be autistic.

[Simon Scott]

This is one of the, this is, wow, this is so fascinating to me simply because the more I learn about the neurodivergent brain and the many sort of intricacies that come with it, I realize it's kindling for a bonfire that the neurotypical world is throwing gasoline on. Yes, it really is. And you know, I can understand how EDS could increase the risk of meltdowns, shutdowns, how it could be a multiplier for burnout. Most definitely, yes. Because I think about how I have worked so hard on nervous system regulation. Ashley, obviously with you, but personally, in my own everyday life and looking at Dr. Luke Bearden sort of thesis of autism plus environment equals the outcome, I have really worked on the sort of environment that I put myself in, which has been sort of desensitizing my everyday. I don't live in a city center anymore. I don't have a job that I go into the office anymore. I don't, you know, have a uniform that I have to put on every single morning. I have sort of a lot more autonomy over my everyday life, which has reduced these sorts of, you know, stress indicators. But it just compounds, doesn't it? You know, there's so much there that I'm sort of thinking of the is that it's like I say, it's kindling for a fire that is just having gasoline poured on it Constantly. Constantly, constantly. Like I can understand the sort of discussion of, you know, the body keeps the score. I had so much physical therapy work on my thighs, my groin area, my like lower core, abdomen, the internal core because of how much tension I was carrying in my body and the effects that came from that. Like the gastro issues that I was having just like sort of going to the toilet without being in pain because of how much tension I was carrying all across my body. You know, there used to be some days actually I used to wake up and my right leg below the knee would almost feel numb. It would feel like I had a peg leg because of how tight my calves were. My Achilles was. And you don't realize how interconnect, like I was getting shoulder pain because my calves were tight.

[Ashley Bentley]

Oh yeah, absolutely.

[Simon Scott]

It's just so interconnected, isn't it?

[Ashley Bentley]

It's so interconnected. And yeah, I mean, you know, chronic hyper arousal leads to insomnia, which also leads to anxiety and burnout. I had one client say to me one time, it feels like my body never lets me rest and yeah, very true. So, but also we need to be careful. This is where it's such a fine line because when I had my shoulder dislocation eight years after my surgery, what had led up to that? Yes, I was going through a lot of, a lot of stress. Everything was just kind of falling apart. But I had been to see two different massage therapists who were working really, really hard on my back muscles and I think they over relaxed certain muscles that were keeping me into place. So yes, we need to relax and yes, we need to, but we don't want to overstretch. We also don't want to. There's a great physical therapist out there, Jenny Debon, who has a lot of wonderful resources online. She has Ehlers Danlos syndrome. She's a physical therapist. So it's about finding the right. There's so much misinformation out there, which is really scary. Don't. You know, going to chiropractors who don't understand.

[Simon Scott]

Those videos terrify me, Ashley. Yeah, yeah, they really do. Like, I watch some people being bent like a piece of plywood and the sounds and you go, a body's not. It's meant to make noise, but not. Not like that. No, it frightens me. I would hate to have sort of experienced that myself.

[Ashley Bentley]

Yes, I would.

[Simon Scott]

I really would.

[Ashley Bentley]

Yeah. So. So be careful out there. Make sure you find somebody that, that knows about the condition before you. Yeah. Before you embark on, you know, this is, you know, massage therapists, physical trainers. I, I'm a big. I. I'm not a fan of, of chiropractors for this condition. I think for other conditions it's fine, but. But for this one, you just can't be too careful when it comes to that.

[Simon Scott]

You know, we're having this sort of conversation and you're speaking to me about eds and going into this conversation, other than the, the bit of notes that we sent back and forth from each other, I have very, very little knowledge on this. I am very. I'm openly to admit that I'm very naive to this, but a lot of what you're saying to me makes sense. You know, you're explaining symptoms to me and I'm going, ah, I can see how that could affect that. Don't you need to do that but not too much. You need to do that, but not too little. You know, that constant sort of balancing act that we're all fighting.

[Ashley Bentley]

Yes.

[Simon Scott]

But yet I can still imagine having this conversation with a GP or a medical professional can lead to some serious dismissal and misdiagnosis.

[Ashley Bentley]

Yes, it is. It's really. It's a lonely, long road for most people to a. Just get their diagnosis. I mean, I was just speaking to somebody about this the other day. I am so glad that we live in the age that we do where we can find information online, we can be our own medical detective of, like, what is going on here? Because do you know what? Actually, I had to. I had been going to see different GPs for a number of years. I mean, even having my shoulder surgery, they should have. You know, nobody told me, hey, you might have this condition. So when things really started to fall apart for me in 2016, this is when I started to do a lot more research and I started to realize, oh, my gosh, wait a second, nobody's. I found this thing called Ehlers Danlos syndrome, and I was like, nobody's talking to me about this. So I mentioned it to my gp and thankfully, at that point in time, I was working in an office job where I had private medical insurance where I was able to get referred to a rheumatologist. A rheumatologist is really your port of call to get diagnosed. But thankfully, had I not had that private medical, it would have. The waiting list to see him was something like three years, because there's only one here on the island. And it's just. But also, had I not specifically asked my gp, hey, I think I have this. Can you refer me to whoever I need to get referred to? So nobody brought it to my attention. I had to bring it to my doctor's attention. And I know of many clients who are just completely dismissed. I'm supporting several people right now who are really having a very difficult time trying to get people to listen and understand. And I feel bad for the gps too. This is a very sort of niche condition that it probably isn't really covered when they go to school. So we're known as zebras in the medical community. And the reason for this is because. So for doctors, doctors are told when they're going through their training, if you hear hooves, think a horse, you don't think a zebra, but every once in a while, if you hear hooves, it just might be a zebra. So we are considered the zebras of the medical community that every once in a while you hear hooves and it is a zebra. So, yeah, it can be very, very traumatic for a lot of people. You feel. And because it's an invisible illness, the amount of people that say, well, you. Even doctors that say, you look fine, you look fine, the tests are coming back fine, there's nothing wrong with you, it's all in your head.

[Simon Scott]

The other one as well, that I can imagine, I assume I know from experience of speaking to a lot of people. I can imagine, especially for autistic women, that this is a difficult thing to sort of have a conversation with a gp. You know, anxiety or dramatic responses or hypochondria, sort of the responses that get sort of thrown back in your face. One of the things that I had when I was discussing knee pain is I was told to lose weight, even though I was 14 years old and was very fit and played a lot of sport. But I still had to lose my weight because my BMI wasn't what it should be for somebody that's five foot seven. Even though I am a very stocky sort of build as a person, like, you know, where body diversity is very key in a species, and yet for some reason it doesn't seem to matter in the medical sort of field. But what frustrates me, Ashley, it doesn't surprise me, but it does frustrate me is that community, knowledge, self advocacy and, you know, personal sort of experience seem to be the only thing that we can sort of rely on other than the postcode lottery of hoping that you get the right GP with the right training, the right perspective and the right mentality to help you. Yes, it is. It is a lottery. And it frustrates me how somebody like you had to have so many different variables within your life to get your diagnosis. And it happens to so, so many of us, whether it's eds, pots to extreme anxiety. We always seem to be going through this sort of like, performative experience just to even sort of get. Not help, but just acknowledgement that we need help.

[Ashley Bentley]

Exactly. And not only that, but, you know, at the time I was in the throes of my, my horrible insomnia and I was just. I mean, I was just a shell of a human and they wanted to throw different meds at me that. The first one was amyltriptyline, which is an, you know, meds have their place for, for the right conditions and the right people. Amitriptyline was, was not helpful for me at, at all. And it was, yeah, I didn't, I didn't do well with that. And then they wanted to put me on gabapentin and, you know, these are really serious, serious meds that, again, they have their place for the right, the right people at the right time. But I was not that those were not helpful for me at all. And in fact, they really, they made me feel worse in many ways. So, yeah, the right stress reduction in your life, the right nutrition, the right exercise, the right people around you, all of these things, that's what's really going to help it. It's. It's so disheartening to hear people, people might get diagnosed and then they get, they throw, they throw things at you that really, actually, it's like they just want to give you something so that you'll go away sometimes. I mean, obviously I don't want to paint this picture for every doctor out there, but. But I, but it happens a lot.

[Simon Scott]

We can only talk from lived experience. You know, we're not saying it's all medical professionals, but I have seen many medical professionals where I've gone to them with my issues and they'll go, oh, we'll look into that. I thought that's what we were doing now. Oh, no, no, we'll monitor it. We'll just look into it. I go, okay, until what point? They go, oh, well, we'll just. We'll just look into it. And I'm like, just tell me you want me to go. If you. I know the next person's waiting, because everybody's waiting. But, yeah, I can imagine that there is so much sort of. There's a lot of an emotional toll that comes from just being autistic in this world. You know, we discuss it so much on this show. I have to watch myself walking into things at the best of times, Ashley. I'm constantly vigilant at trying to sort of prevent injury, manage fatigue, make sure I'm eating the right food, making sure I'm spending time with the right people. I've learned how much batch of my life, my battle, my, like, life force. My battery is sold to opening tabs that don't need to be open. You know, having these constant, like, mask that's running and adding this on top of a already exhausting, extraneous sort of just living experience must be just so tiring.

[Ashley Bentley]

It's so tiring. I mean, I remember when, before I had my shoulder surgery, I just briefly moved back to the States and ended up dislocating my shoulder. And I couldn't. I had health insurance, but it was the McDonald's of health insurance, really. You know, I. My emergency room visit, where they just literally, they just popped it back in. They didn't fix it or anything. They just sent me on my way. I think that alone, even with my health insurance, cost me $5,000 just to have them pop it back in. And every time it would pop out, then your likelihood of further dislocations goes way up. So I ended up having to sleep sitting up in a sling. This is how I slept for a good year and a half before I had my shoulder surgery. I had to sleep because it would dislocate in the night if I didn't. So I had to sleep sitting up with my sling on, which obviously was not getting good sleep. I couldn't. Every time I had to get dressed and pull my shirt over my head, I was in absolute. It was almost a traumatic event just getting dressed because I was so afraid, because I could very easily it would pop out. And I wasn't one of those people where if it popped out, I could easily pop it back in. So it was always just like, oh, my God, this. Me getting dressed could lead to Going to the emergency room. It was just this Constant and it.

[Simon Scott]

$5,000 ago.

[Ashley Bentley]

Yeah, yeah, exactly.

[Simon Scott]

I can understand the stress that that would cause it.

[Ashley Bentley]

Yeah. And I mean when I, when I finally did, you know, get diagnosed in 2019 and had a full, you know, just sort of falling apart, I had to. The only way to heal was I had to simplify my life as much as possible. I had to let go of some friendships. I had to let go of the relationship I was in at the time. And here I was living by myself, living a very quite just a very. Just basically existing, just basically trying to find my baseline, trying to look after myself, trying to cook if I could. But I couldn't do all of those things at once because. Or obviously not at once, but if I cooked one day, then that, that could be all that I could do. And then the next day maybe I could shower and then the day after that maybe I could go to the store. I couldn't do those three things in one day. So it's a very lonely existence. While you are trying to navigate recovering from, you know, what, what can, what can easily happen if you don't prioritize your health and well being, you can easily find yourself where I was seven, six, seven years ago.

[Simon Scott]

And you've just mentioned something there that is, is something that I have come to learn. I am accepting I am a disabled person. I still have that sort of internalized ableism that comes with my mask that goes. But are you though something that I didn't consider when I was going through burnout and the unmasking process and, and how difficult that is. People don't talk about how difficult unmasking is, especially when so much is tied to it. The feeling of isolation.

[Ashley Bentley]

Yeah.

[Simon Scott]

Of being alone and sort of ruminating on the thought of why does this have to be like this? Why is this happening to me? Why can't I just do this? Add PDA onto that? Ashley?

[Ashley Bentley]

Yes.

[Simon Scott]

What the fuck?

[Ashley Bentley]

Yeah. Yeah. Like, I know what a difficult sort.

[Simon Scott]

Of day to day like that is truly disabling. When the meat body fails the mind, when the mind is already feeling frail. Must have been so hard.

[Ashley Bentley]

It was so hard. And I, you know, I never really learned to, to cook for myself over the years, but I was quite good at even, even, you know, once I got healthy and lost a bit of weight and was really healthy, I was the salad queen. I love to make salads, but cooking, that was just. I had a real sort of like, no, no, no, that's not my thing. But Then when my, when my health fell apart and I realized, you know, I would try and make a salad for myself thinking, well, this is going to be healthy. But then it would just sit there and it wouldn't. This, this, the slow gut mobility. And my naturopathic doctor friend, she was wonderful. She was like, Ashley, you need cooked vegetables. Your body has no energy right now to break down raw vegetables. You need cooked vegetables. And I just collapsed in a heap of tears. I was like, no, I've got to cook for my, I have no energy to do this. How am I going to do this? And, but I was, I was determined, I thought and I very, very slowly I began to batch cook big things of soup with like lots of vegetables and things like that. And I still do that to this day. This is what I do. And I realize it's an act of love. You know, cooking is really an act of love for ourself and I never.

[Simon Scott]

It's choosing to do something for yourself isn't can be a positive act? For sure.

[Ashley Bentley]

Yeah.

[Simon Scott]

Well, you've kind of touched on sort of like the day to day living. Like, you know, we're combining the PDA with fatigue and the sort of like navigating sensory environments. But one of the things that I am constantly sort of having to live with in my head is I don't look disabled.

[Ashley Bentley]

Yes.

[Simon Scott]

So when I'm having these issues and I'm trying to explain it to somebody, the sort of imposter syndrome that I go through where people go, oh, but you hold a job and you have a girlfriend and you own a home, like how you can't, you can't be. And then suddenly rather than going, oh, but actually what happens to me is validating and it's very extreme. You kind of go, but is it really.

[Ashley Bentley]

It is. You, you've just described that that perfectly. It is so, so difficult because, and you know, people think they're being helpful. People are, have you tried, have you just tried suffering? And it's just like, you look great. What are you talking about? Oh, it's fine. You know, and, and this is, this is a, a real sort of. This is going to test you and it's going to test your radical acceptance of realizing, you know what you don't. It's not your job to make other people understand. And that's a tough one. It's a real tough one. Now of course, your loved ones, your closest. Yeah, it's going to be pretty important that you keep that conversation going. Share with them as much information as you can, but for, you know, for day to day acquaintances and things like that, just, it is a continual exercise and just realizing they don't understand and it's not my job to make them understand. It's a tough one.

[Simon Scott]

Yeah, that's one of the things that I've sort of experienced with my. And it does feel like coming out, coming out as autistic. It really does. I'm reading a lot of material about that at the moment and sort of. I actually had a discussion with one of my really good friends who's gay about it and they were like, yeah, no, that's exactly what it feels like. You're sort of relaying something and going, I'm not lying. This isn't the boy who cried wolf. This is the wolf. And people go, okay, no, but really this is the wolf. And that's sort of like, you know, you're, you're reaffirming it to them, but you're also doing it to you. You're waiting for that sort of validation of somebody goes, oh, I see you, I hear you. I don't feel you, but I know that you feel.

[Ashley Bentley]

Yeah.

[Simon Scott]

And then it sort of validates what you're feeling. And I've really made steps and progress in my own sort of mental health journey in accepting what I am, which is an ORD HD person. And so much of my life I was going, why is this doing this? Why is this doing that? Why is this doing that? And when I got the diagnosis, all of those questions, they just, they just disappear. You have your answer, but you need to hear it from somebody else as well, especially from a loved one, because that's when we're most vulnerable, isn't it? That's where we sort of relax and feel most safe. And I understand how, you know, adapting your life in a sort of creative way. I've, I've really tried to do that myself and I feel like the empathy that I've developed for others by discovering it for myself has been one of the great joys of this sort of healing journey that I've gone through. I feel like I've been able to really sort of connect deeply and help people and sort of selfishly heal myself by working with others. And again, at the same time, I still have these moments where I have a friend who really struggles with, you know, she walks with a stick and she requires a blue badge for parking and things like that. And I still have to stop myself comparing, even though we're all so different.

[Ashley Bentley]

Yes.

[Simon Scott]

But I still have this sort of, you know, I see my friend struggling, going up the stairs with a stick and I'm walking up two paces. But yet I still have mobility issues, but it's not present and it's day to day. And I have really found a lot of benefit of having that sort of connection and connectivity with my support work as my support group. Because now I don't always have to do the work alone. Like my partner can recognize things that I'm struggling with. Like something so simple. Ashley, we discussed, I discussed it with Jordan the other day. Rather than my partner going, can you do this? She goes, would you be able to do me a really, really, really big favor? And just the change of language, the change of tone, the change of energy just breaks my pda. It really stops me feeling disabled by that.

[Ashley Bentley]

Yes.

[Simon Scott]

I can't do that. For me, I've needed my partner to help me do it. So creating those sorts of connections with my support circle, like with my loved ones of. I've. I drove to see my parents at the weekend. I drove for two hours. I hate driving on a weekend because I just don't like weekend drivers. But my, I used to walk through the door and my mum would be like, oh my God, darling, how are you? Have you, have you done this? Have you done that? She'd be touching me and hugging me and I'd just be like, oh. And now I kind of pull up on the drive, I'll sit in the car for a moment. My mum will wave at me through the window and she will wait for me to come to the door. Oh no, she knows I'm here.

[Ashley Bentley]

Yeah.

[Simon Scott]

But she lets me enter in my own time and space.

[Ashley Bentley]

Nice.

[Simon Scott]

That has been so helpful.

[Ashley Bentley]

Oh wow.

[Simon Scott]

So things like that. Yeah, totally. Have been like life changing for me.

[Ashley Bentley]

Yes.

[Simon Scott]

So I can totally understand the need to sort of really communicate so that people can take the accommodation off for you.

[Ashley Bentley]

Yes, exactly. And realize, you know, if you get to a place where you've had a full on like, what happened to me? Just a full body and mind sort of shut down, you've really got to be so understanding and it's going to be, yeah, it is that lonely road. But I think you really hit upon something. There is that connection and when you're speaking to somebody who isn't understanding and doesn't quite get it, then we feel like we're not connecting and we, we as humans, we like to connect with one another. So if we feel like that connection isn't, isn't there, that's a tough one. And, and go easy on yourself for feeling disappointed and, and for, you know, you may a lot of times what, what will end up happen, happening. And this is quite an autistic trait of oversharing. You know, we might sort of, yeah, but this is happening and this is happening. You know, trying to convince somebody and then you start to think, oh God, now I'm sounding like I'm just trying to, I'm trying too hard to convince. And then you start saying, yeah, so recognizing and trying to build that connection with your loved ones is crucial. Everyone else, radical acceptance. And just know what's most important is that connection with yourself. So I love the fact that your partner knows how to speak to you to circumnavigate that pda and maybe you can begin to start to do that with yourself as you, with your own internal dialogue. So take your cue from her and begin to sort of turn that inwards. That might be helpful. But you know, really prioritizing our, our energy because we are prone to exhaustion, because again, our muscles are working so hard, they're working twice as hard as someone else without hypermobility. You know, really set yourself up for success. Prioritize rest days and simplifying your life as much as possible. These are. And know that the sensory overwhelm is huge with Ellis Danlos, like it is with being neurodivergent. So really set your life up to help with those sort of things. And know just because you're not outwardly looking like you have a disability, your lived experience is just as valid as anyone else's.

[Simon Scott]

Absolutely. Absolutely. Well, we'll take a short break here, Ashley, and when we come back, I'd like to discuss maybe a couple more support strategies that we could do and then sort of just wrap up as we go. So stay with us folks. We'll be right back. Have you ever felt stuck in patterns that don't serve you, struggled with stress, or wanted to connect more deeply with yourself? Then I have to introduce you to a friend of the podcast, Ashley Bentley of integrated coaching, breathwork and hypnotherapy. Ashley is a highly experienced clinical hypnotherapist and coach specializing in working with neurodivergent minds. Through a unique blend of integrative coaching, breathwork and hypnotherapy. Ashley helps people rewire subconscious patterns, regulate their nervous systems, step into more empowered versions of themselves. Whether you're dealing with addiction, anxiety, burnout, or struggles with self acceptance, Ashley offers practical and science backed tools tailored just for you. Her unique methods combine Neuroscience, storytelling, subconscious transformation to create real, lasting change. Jordan and I can personally attest to the profound and transformative effects of her sessions, which have been life changing. She does all of these sessions online, meaning she can work with you no matter where you are in the world. If you're ready to break free from old patterns and start living with more clarity, confidence and connection, go to Bit ly Ashleynde to book a free consultation or learn more. Welcome back to the Neurodivergent Experience. Simon Scott, here with the wonderful Ashley Bentley with. We've been discussing EDS and the sort of day to day living with that and how it relates to neurodivergence. We've discussed a couple of support strategies, but the one that I always seem to come back to, Ashlyn, it's like by sort of little beacon, is spoon theory. Because people seem to understand it. It's a very easy thing to sort of communicate.

[Ashley Bentley]

Yes.

[Simon Scott]

Is that something that you implement with your sort of like day to day living with, with eds?

[Ashley Bentley]

Yeah. So I learned about spoon theory very early on in my researching of, of Ellis syndrome. And so for those of you out there who may not be familiar with it, I can't remember the name of the lady who came up with this, but basically a lady was having lunch with her friend and was trying to explain to her friend how, how much energy she has in any given day and what she can, what she can do. And there was a big, there was a glass full of spoons on the table. And so she thought, okay, right, I'm gonna show you what I mean here. And she threw the spoons out on the table and she picked, I don't know, maybe 10 or 12 spoons. And she was like, this is how much energy I have every day. And you know what, just getting up and getting dressed, I take away three spoons and getting in the car and coming here, I've taken away another three spoons. So here we are, we're sitting, you know, early in the day already half my spoons are gone. And I've only just gotten up and gotten dressed and come to see you. And then so it lead. So it's a real visual to how much energy we have. And this is what's crucial as well. It's really important that people try and find what their baseline is. How many spoons do you have? What is the amount of energy you can expend in a day without leading to a crash later, later on the next day or sometimes even a few days later, Find that baseline and stick to It. And then you can vary in small doses, start to increase that over time through things like really prioritizing your nutrition. The more you nourish your body with the right nutrition, the more spoons you might get. Also, strength training is really interesting. I don't want to go too far. How have you been using the spoon theory, Simon?

[Simon Scott]

Well, I sort of view it like currency.

[Ashley Bentley]

Yeah.

[Simon Scott]

In the, say as an example, I want to go to the gym. I will get two spoons by going to the gym.

[Ashley Bentley]

Yeah.

[Simon Scott]

How many? But how many will I lose going? So if I get there and the traffic's bad and all the machines aren't working and then the locker that. Because I have to use even numbered lockers, if there isn't an even number locker on the side that I like to use it. And then suddenly you go, oh, well, I got two, but I used four. So it was negative two.

[Ashley Bentley]

Yeah.

[Simon Scott]

So I then have to go, is today the right day to do that? Then it's like, as an example, I'm going to a festival this upcoming weekend because we're recording just before the bank holiday. I know. I know for a fact I'm going to use an awful lot of spoons when I go there. Even though I'm going to have a great time. I'm going with some old friends, we're going to tell some great stories, some good memories, let my hair down. I will gain an awful lot of spoons by doing it. However, I'm gonna use up the reserve for the week after spoons while I'm there.

[Ashley Bentley]

Yeah.

[Simon Scott]

So I have to acknowledge that even though I'm going to do this thing, I'm going to have a wonderful time the week after I'm gonna have a spoon deficit. So I've put things in place of. Rather than going, oh, I have to have this done and this done, because I'm going away, I go, I have to make sure that I'm not doing this and not doing that after I go away.

[Ashley Bentley]

Yeah.

[Simon Scott]

So I've almost set the week up after I go to be a lot calmer, a lot clearer. I've communicated with work that I'm doing a big thing so that I've lowered my sort of like, expectations with what I'm going to achieve that week. Because that's the thing that burns my spoons, is the pressure. It's life goes on. The mortgage needs paying, the bills, the kids need picking up, whether you're tired or not. So it's sort of making these certain choices. Something is so simple actually as it's bright today. So I'm going to close the blinds and sit with the lights off with dark mode on my PC. That will help with my spoons.

[Ashley Bentley]

Yeah.

[Simon Scott]

And it's so simple and it almost. To somebody you will explain it to and you almost feel like you cringe sometimes. Like when I go, oh, I'm sat in a dark room with a blanket over my head and it's, you know, 40 degrees outside and people go, that's odd. I go, it is odd, but it feels good. And that's sort of my sort of experiences with it. But it's something so simple as I've had a really busy day at work and I have to go pick my partner up from work and I say to her, my love, I've had a really stressful day, I need to get this done. Can you get the train today? She goes, yes, yes, I can. And I know that I may sort of be affecting her spoon count by asking for an accommodation, but then I sort of have a bit of give and take. I go, go, well, if you get the train, I'll make dinner tonight or I'll do this. Instead of like, what jobs have you got on your job list at home? Can I take something off of you to compensate me giving you something? And that's been something that's really helped me is this, this idea of like, it's almost like an exchange of spoons. It's like if I'm asking for two, I have to make sure that I already have two to give later on, you know, so that's sort of how I've been. I've been treating it. I treat it like currency. It has interest, it compounds. You've got to sort of manage. Manage it and not get in debt.

[Ashley Bentley]

Yes. Yeah, that's a. That's a perfect way of looking at it. That is an absolutely perfect way of looking at it. And I love how, yeah, it's important to look at the big picture. Look long. What's coming up? What. What do I have after this big day? What do you know? Am I. And, yeah, okay, it. Maybe it's another layer of organizing your life, but hey, setting yourself up for success and as many spoons as possible is just. It's going to be so helpful. It's so worth putting in that extra tiny little bit of effort of really looking at the big picture and seeing what you've got coming up and setting yourself up for success. Yeah, it's brilliant.

[Simon Scott]

And something else that I try and do as well, which is sort of Like a gratification thing. And when I first started doing it, I'll be honest, I felt kind of silly. But now it sort of really helps me, is when I am looking at my sort of schedule and trying to organize things, I tell myself, I go, future you will, thank you.

[Ashley Bentley]

Yes, yes.

[Simon Scott]

But one of the things that I do to sort of like, really help with that is when the moment comes, I actually say, simon, in the past, thank you for doing that for me. I actually sort of have this sort of little conversation with myself where I go, future, you will, thank you. And then when I get to the moment, I go, thank you for doing that for me. I really appreciate that. And that is something that's really, really helped.

[Ashley Bentley]

Simon. I love this. Oh, my gosh, this is. This is brilliant. That's an extra little. Yeah, because I do the whole future you thing all the time. But. But, yeah, so normally I ask people, are you taking a moment to congratulate yourself, give yourself that little dopamine hit? But I love doing it specifically thanking. Thanking past you. That is amazing. Yeah, that keeps it all. I love that. I love that. I think that is brilliant. I don't know if you want to talk very quickly about strength building and how.

[Simon Scott]

Yeah, I'd love to. Yeah, we can do that and then sort of wrap up, if you like.

[Ashley Bentley]

Yeah, yeah. So it's a tricky one, but it's very important because our collagen is faulty and that can make our joints very vulnerable and can be quite fragile. So when we're dealing with strength training, we have to be very, very careful in how we build our muscles because our muscles are holding us together. It's really important that you prioritize the strength of your muscles and really look at, you know, if you do have a weakness, find the right physio who can show you how to build up the muscles in that area. But basically, focusing on getting your body as strong as possible is just a. Is a brilliant way to think about it. And what you want to do is you want to make sure that you are not. If you're lifting straw, like right now, for my age group group, it's very important that I lift and use weights that are very heavy. This is very advantageous to my age group and where I am in my life, but it's really important that I don't do these weights to failure. So usually that's really a big point. And sort of building muscle in the gym, you know, you work to failure and. Yeah, that. That makes sense for people who don't have faulty collagen, but you don't want to work to failure. That's a really important one. You want to build that muscle, but fewer reps. Don't do it to failure. Really prioritize your nutrition. There's some amazing supplements out there. Get the right amino acids, get the right gut biome going. There is something called the QSAC protocol, which is a protocol of different supplements of amino acids, which I'm a fan of and I use. But, you know, obviously speak to your doctor, do your own research, make sure that it's whatever supplements you bring on are safe for you to do. So.

[Simon Scott]

Yeah, I think that's wonderful advice because one of the things that I've implemented into my own sort of workout routines at the moment is my PT calls it like a superset. And I specifically asked for a PT that had ADHD or autism. When I went to the gym, I went, do you have anybody that specializes? And they sort of went, oh, I know who you'd like. And one of the things that he does with me is like, if I'm doing like a shoulder press or, you know, a back pull is on the last set, we start by holding in the position. So I will lift the weight and just hold it.

[Ashley Bentley]

Isometric hold. Yeah.

[Simon Scott]

And then just keep it in position. And then when I let it go, I let it go really slowly. Really, really slowly. And not. I don't have like these high impact sort of workouts. I'm not like, I will do kettlebells, but I will never do the heaviest one that I can do. I'd much rather do 20 reps at a much lower weight than just do my personal best every single time. I'm very particular around, like, where I put my feet position and I. It's, it's all these sorts of like, micro details that I have with, like, my exercises. So I do not do running machines at all. My cardio is purely swimming because sensory. It feels brilliant, but it's, it's focusing on joints. It's focusing on the sort of the extension, the, you know, adduction. Yeah, all these sorts of movements. Because all of the pain that I feel is in, like the pinpoints of the tendons and of the joints. He's making me really. After listening to the conversation we've had today, Ashley, I'm really starting to wonder whether EDS is, you know, whether it's something that I have, I am living with, that I'm just not acknowledging.

[Ashley Bentley]

Well, I think this is the thing. There's, you know, understanding the difference between hypermobility and Ehlers Danlos syndrome, you know, and depending on who. What expert you speak to, you'll get a different answer. You know, I think it's kind of looked at as if. If you are managing your hypermobility without all. Any other issues, such as, like, pots and gut issues and exhaustion and things like that, then you can kind of keep that as hypermobility. But if you are dealing with the whole host of issues of exhaustion and fatigue as well as the hypermobility, then, yeah, it sounds to me like you. You most likely do have Ellis Danlos syndrome.

[Simon Scott]

No, this is what I love about this podcast. Every time I do an episode, I find something new that I've got going on. I'm just like, oh, let me learn about this today. Oh, that sounds familiar. And I'm sure if you've listened to this show, as a longtime listener, whoever you are there out there, you're probably nodding along, going, yes, I. Me too. Because that's one of the reasons as to why doing this show. I love doing it. I love making episodes for you listening. But I learned so much about myself, and that's why I think community outreach and building these sorts of spaces are so integral. Because I never would know this stuff unless I actually spoke to my people in my culture. You just wouldn't know.

[Ashley Bentley]

And it's so helpful for forgiving ourselves for maybe past things that we thought, oh, I was told I was being lazy or I was being clumsy.

[Simon Scott]

Sure, yeah, yeah.

[Ashley Bentley]

And actually, you can go, oh, my gosh, actually, look how well I have done with all of these things that I've managed throughout my life without. Without a diagnosis. So I hope it really helps people to have a lot more compassion as they. As they re. Re. Examine their life through the lens of these. These different diagnoses so that we can understand ourselves better and. And that helps with connecting with one another better. Connecting with ourselves better. You know, these sort of things. The silver lining I look at with all of these things is, have. Had I not been diagnosed with this, you know, there's no way I would be in the shape that I'm in today. I am in the best shape of my life, and my nutrition is just amazing. Like, I. And I am so in tune with my body as well. I've learned how to really. Because so much of my life, I've had to sort of ignore all of these things of like, no, no, I can't. So. So, yes, I hope everybody looks at this as like, gosh, not. Not another. Not another Thing.

[Simon Scott]

Another one. I know it will.

[Ashley Bentley]

It'll. It'll. It'll force you to level up in so many ways. So. So, yeah, it might seem daunting, but. But you'll get to know yourself in a whole new way.

[Simon Scott]

I think that's great advice because so many of the. The mental health aspects, the negative ones, I must say, that came with so much of the confusion that I lived with throughout the majority of my life until I was 28 is I was looking for answers, and now I have those answers. I'm putting the energy of looking and feeling confused into doing something about it. And that's. That's the big positive. And that's the one thing that listening to this episode I really hope you can. You can take from is. Yes, being neurodivergent is extremely complex. There are a lot of hidden things that I don't like using disorders and the word conditions because of the sort of negative connotations that come from it. Because you can have these issues and still be a good person. So much of being tied to being a good person was tied to sort of all of these things for me, and that's been one of the big changes that I've had. But having awareness and learning who you are is probably the greatest gift that I've had from this whole sort of experiences. I really like who I am now, and I'm a lot kinder to myself because it's not an excuse, it's an explanation.

[Ashley Bentley]

Yes.

[Simon Scott]

So I really hope people sort of take that energy away from these conversations as every conversation that we have here on the neurodivergent Experience. And, Ashley, I've loved your company today. Thank you so much for stepping in with Jordan. You're a bit of a rescue hero on this show. We go. We don't know about this. We'll give Ashley a call. So thank you for picking up the phone.

[Ashley Bentley]

Big shoes to fill. It's. It's. It's been an absolute honor and a pleasure. Thank you so much. Thank you so much for having me on. It's always. It's always such a fun time being here, so thank you.

[Simon Scott]

No, it's my absolute pleasure. And thank you as always, for listening. Remember, Ashley's new show, Mindful Mondays, are coming a little bit later in the year, so keep your eye on the feed for those and all of her links. If you want to work with Ashley, I am a example. I have done some great work with Ashley, and she's helped me really make some wonderful internal breakthroughs associated with, like, the nervous system and just self image. So her links are in the description below. Please go and check her out. Thank you so much for being here. We will be back with a hot topic tomorrow. Jordan will be in that one because we recorded it before he went away and then your normal programming will resume from next to week. So be kind to yourselves everyone. Take care, be safe. Thanks for tuning in to the neurodivergent Experience. We hope today's episode sparks something for you. Whether it's a new idea, a bit of validation, or just a moment of connection, Remember, new episodes are every week, so be sure to join us for the next one for more conversations and insights in the to the neurodivergent Experience. If you've enjoyed this podcast, help us grow. You can do that by rating and reviewing this show. Your support makes a huge difference in helping us reach more people who could benefit from these conversations. You can connect with us on social media, find us on Instagram, Facebook, Tik tok. Just search for the neurodivergent Experience. Thank you again for listening and until next time, take care of yourself. You're not alone in this journey. ACAST powers the world's best podcasts. Here's a show that we recommend.

[Ashley Bentley]

Hello.

[Brooke Devard]

Hello, it's Brooke Devard from Naked Beauty. Join me each week week for unfiltered discussion about beauty trends, self care, journeys, wellness tips and the products we absolutely love and cannot get enough of. If you are a skincare obsessive and you spend 20 plus minutes on your skincare routine, this podcast is for you. Or if you're a newbie at the beginning of your skincare journey, you'll love this podcast as well. Because we go so much deeper than beauty. I talk to incredible and inspiring people from across industries about their relationship with beauty. You'll also hear from skincare experts. We break down lots of myths in the beauty industry. If this sounds like your thing, search for naked beauty on your podcast app and listen along. I hope you'll join us.

[Simon Scott]

ACAST helps creators launch, grow and monetize their podcasts everywhere. Acast.com.