Season 7, Episode 8: EDS, POTS, and MCAS with Dr Megan Thomas and Bianca Comfort
On this week’s episode Monique chats with two amazing guests – Specialist GP Dr Megan Thomas (she / they) and Clinical Psychologist Bianca Comfort (she / her) – about Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Disorder (MCAS).
Dr Megan is a queer, disabled, neurodivergent doctor with lived experience of EDS, POTS, MCAS, and related conditions. She is a GP Specialist and one of the Founding Directors of Connected Health Alliance, an EDS CORE Network of Excellence and health promotion charity working to improve the lives of hypermobile humans through the provision of interdisciplinary healthcare, clinician education, and research. Megan is a passionate advocate of holistic, trauma-informed, person-centred care that is affirming for people of all neurotypes, identities, and experiences.
Bianca is a Melbourne-based neurodivergent Clinical Psychologist and is the Director of Comfort Psychology, a telehealth practice focused on chronic illness and neurodivergence. She is also the Vice President of the Australian Psychological Society (APS), and Co-Chair of the Australian EDS & HSD Network. Bianca's expertise lies in the intersection between neurodivergence and chronic illnesses such as EDS, POTS, and MCAS. Drawing from both her professional and lived experience, Bianca is a passionate advocate and educator.
Monique, Megan, and Bianca cover:
Megan and Bianca share what neurodivergence means to them, and their experiences as neurodivergent health practitioners with chronic illnesses.
What are EDS, POTS, and MCAS, and how are these conditions diagnosed?
Why do we see EDS, POTS, and MCAS commonly occurring together?
How do these three conditions relate to Autism and ADHD?
Factors to consider when managing multiple co-occurring conditions.
The triple empathy problem.
The types of supports people may need if they have these conditions.
How to access support.
[00:03:56] Megan and Bianca share what neurodivergence means to them, and their experiences as neurodivergent health practitioners with chronic illnesses
Key Takeaways:
“Neurodivergence” means everything to Bianca — it’s part of her identity, how she experiences the world, and how she’s found connection and self-acceptance through community and neurokin.
Megan shares that their understanding of neurodivergence changed drastically over time, especially after moving beyond the deficit-based medical model and into spaces like the neuro-queer community, where she began to see themselves more clearly.
Bianca played a pivotal role in Megan’s realisation, offering them insight that she might be AuDHD and gifted — helping Megan reframe her differences and embrace a more authentic, unmasked self.
Being late diagnosed brought both grief and gratitude for Megan — grief for the years spent misunderstood and self-critical, and gratitude for finally having language, clarity, and community that made sense of their experiences.
Living and working as late-identified neurodivergent practitioners with chronic illness is both deeply meaningful and deeply challenging for Megan and Bianca — there’s profound burnout, grief, and physical struggle behind the scenes, but also a strong drive to support others, create safer spaces, and share hard-won insights.
Ehlers-Danlos Syndrome (EDS)
Key Takeaways:
EDS refers to a group of heritable connective tissue disorders caused by genetic changes that affect how connective tissue is made; connective tissue is not absent in EDS but it’s built “wrong”, using Bianca’s cake baking analogy — like swapping sugar for salt.
Hypermobile EDS (hEDS) is the most common type, but its genetic cause remains unknown, so diagnosis relies on clinical criteria assessing hypermobility, symptom patterns, and exclusion of other conditions.
Screening tools like the Beighton score and Hakim Five questionnaire can help identify hypermobility, though limitations mean some people with symptoms may not meet full hEDS criteria but still fall under hypermobility spectrum disorder, which is treated similarly.
Because connective tissue is present throughout the body, EDS symptoms are multisystemic — including joint pain, migraines, gut issues, fatigue, and more — making it hard to identify and often missed by clinicians.
Social media and community awareness have become valuable tools in recognising patterns and prompting diagnostic evaluation, particularly in a medical system that frequently overlooks or misattributes these symptoms, especially in neurodivergent people.
“We often refer to them as ‘the trifecta.’ They occur commonly together, and they also occur commonly with neurodivergence.”
Postural Orthostatic Tachycardia Syndrome (POTS)
Key Takeaways:
POTS is a type of dysautonomia affecting the autonomic nervous system, often seen in people with EDS, and presents as a significant increase in heart rate upon standing without a corresponding drop in blood pressure.
It disrupts automatic bodily functions like heart rate, blood pressure regulation, digestion, and temperature control — creating symptoms like dizziness, brain fog, fatigue, chest pain, headaches, gut issues, and insomnia.
Diagnostic criteria include a sustained increase in heart rate of 30+ bpm within 10 minutes of standing (or 40+ bpm in adolescents), or a standing heart rate over 120 bpm — often confirmed via the NASA Lean Test.
Because POTS symptoms often mimic anxiety — especially in high-stimulation or upright contexts — many people are misdiagnosed with anxiety disorders instead of being properly screened for dysautonomia.
Recognising POTS is essential for effective treatment; mental health support alone won’t address the physiological dysfunction at play when the autonomic nervous system is in sympathetic overdrive.
Mast Cell Activation Syndrome (MCAS)
Key Takeaways:
MCAS is an immune condition where mast cells — which are part of the body’s threat response — are hypersensitive and react excessively to various physical, emotional, or sensory triggers, causing widespread inflammation.
Mast cells release hundreds of chemical mediators that can affect nearly every body system, especially areas exposed to the outside world (like the skin, gut, bladder, lungs), leading to symptoms such as flushing, fatigue, brain fog, gut pain, and allergic-like reactions.
Hormones, particularly oestrogen, can heavily influence mast cell activity, which may explain symptom flares around ovulation, menstruation, and perimenopause — and in hormonal changes seen in gender-affirming care contexts.
MCAS is frequently misdiagnosed or dismissed as psychiatric illness due to its varied and changing symptom picture; people often end up with multiple partial diagnoses like asthma, IBS, endometriosis, or PMDD instead.
Diagnosis is usually clinical, based on symptoms across at least two body systems and response to treatment like antihistamines — which can be trialled at home as an informal starting point while pursuing medical support.
[00:57:11] Why do we see EDS, POTS, and MCAS commonly occurring together?
Key Takeaways:
EDS, POTS, and MCAS are referred to as “the trifecta” because they frequently co-occur, often sharing overlapping genetic vulnerabilities and multisystemic features — with EDS being definitively genetic and POTS/MCAS having likely genetic components that can be triggered later in life.
Life stress, trauma (physical or emotional), viral illness, or accidents can activate previously silent symptoms of POTS and MCAS — especially in those with undiagnosed EDS or neurodivergence who have been have often been chronic nervous system stress.
In EDS, overly stretchy connective tissue affects blood vessels, making them too floppy to properly constrict when upright — causing blood pooling in the legs and triggering the fast heart rate and lightheadedness characteristic of POTS.
Connective tissue also supports immune and nervous system structures, and when it’s faulty, mast cells (which live in connective tissue) may become hyperactive, contributing to MCAS and amplifying the dysautonomia seen in POTS.
These conditions feed into each other: gut dysfunction from MCAS and dysautonomia leads to poor nutrition and hydration, which worsens POTS symptoms, reduces collagen production, impairs wound healing, and allows mast cell mediators to further break down connective tissue — creating a self-perpetuating cycle.
[01:03:10] How do these three conditions relate to Autism and ADHD?
Key takeaways:
People with EDS are around 7.5 times more likely to be Autistic and 5.5 times more likely to be ADHDers, and studies show that between 32–74% of ADHDers and 13–53% of Autistic people may have EDS — though actual rates are likely higher due to underdiagnosis. We have included links to these studies below.
Research by Dr Jessica Eccles (@drbendybrain) highlights a strong connection between neurodivergence and hypermobility, showing that the more hypermobile someone is, the more likely they are to experience chronic pain and dysautonomia — with MCAS possibly mediating this link.
These overlapping conditions are significantly more common in women and gender diverse folks, who are also more likely to be dismissed, misdiagnosed, or overlooked entirely — often told their symptoms are psychiatric when they’re actually physical and multisystemic.
The brain perceives joint instability in EDS as a constant threat, especially when proprioception is affected, which may explain findings like a larger amygdala and higher anxiety in people with EDS — it’s a physiological response, not just a psychological one.
Mental and physical health are still treated as separate in both research and care, but for neurodivergent people with complex chronic illness, it’s essential that professionals work across silos to recognise how these systems interact and advocate for integrated care.
[01:09:01] Factors to consider when managing multiple co-occurring conditions
Key takeaways:
Managing “all of the things” requires a neuro-affirming lens — recognising how each condition interacts with the others and how neurodivergence influences treatment tolerance, access, and success.
ADHD medications like stimulants may worsen POTS symptoms by increasing heart rate or blood pressure, and those with MCAS are more likely to react to medications or excipients, complicating treatment plans.
Executive dysfunction is often intensified by chronic illness due to fatigue, low brain perfusion, and neuroinflammation — making it a major barrier to implementing care strategies and self-management routines.
Sensory sensitivities and feeding challenges (e.g. ARFID or texture aversions) complicate dietary interventions like low-histamine diets; safe foods must be preserved while tailoring MCAS support strategies.
Neurodivergent people may struggle with common recommendations like compression wear, salt loading, or fluid targets — so care must be individualised, flexible, and avoid shaming approaches that ignore neurodivergent realities.
[01:13:50] The triple empathy problem.
Key takeaways:
Many Autistic and ADHD individuals experience interoceptive challenges and alexithymia, which make it harder to identify or describe internal physical and emotional states — a major barrier when trying to explain symptoms to doctors.
Around 85% of people with EDS report clinician-associated traumatisation, reflecting how often neurodivergent people with chronic illness face invalidation and harm in medical settings. We have included a link to this study below.
The double empathy theory challenges the idea that Autistic people have communication deficits — instead, it highlights that communication breakdowns occur between autistic and non-autistic individuals due to mismatched communication styles.
The triple empathy theory adds a third layer: the patient–professional relationship, where neurotypical medical expectations (like being able to clearly describe pain or understand explanations) further increase miscommunication and reduce quality of care.
These layered empathy gaps contribute to widespread misunderstandings, misdiagnoses, and barriers to care for neurodivergent people with chronic illness, underscoring the need for more neuro-affirming, accessible medical practice.
[01:17:08] The types of supports people may need if they have these conditions.
Key takeaways:
A multidisciplinary team can make a big difference — this may include a GP, physiotherapist, osteopath, dietitian, psychologist, occupational therapist, support worker, or patient navigator to help manage executive function and complex care needs.
GPs can diagnose hEDS, POTS, and MCAS, though referrals to specialists like geneticists, rheumatologists, or cardiologists may be needed depending on the presentation — but having at least one practitioner familiar with these conditions can help guide and educate the rest of your care team.
Practical scaffolds like bringing a support person to appointments, asking providers to write things down, and breaking tasks into steps are essential — particularly when new diagnoses require big changes in routine or self-management.
Neurodivergent-friendly adaptations, such as preserving safe foods, avoiding overwhelming routines, using colourful or sensory-friendly medical aids (like compression socks), and creating physically accommodating workspaces (e.g., recliners, or leg elevation), can significantly improve daily quality of life.
Supports that reduce cognitive load — like Webster packs for medication management and pharmacy script tracking — can be life-changing tools for people with executive dysfunction, helping prevent missed doses and easing the mental burden of chronic care.
[01:27:10] How to access support.
Key takeaways:
Gather your own data first — fill out the hypermobile EDS clinical criteria, complete a NASA Lean Test for POTS, and use the Mast Cell Mediator Release Questionnaire for MCAS. Bring this documentation, along with any wearable heart rate data, to a long GP appointment.
Book the longest GP appointment possible (and ideally a follow-up) to give time for discussion, test ordering, and review — especially if your doctor isn’t yet familiar with these conditions.
Useful online tools include the EDS Society diagnostic app, the EDS GP Toolkit, the Australian POTS Foundation website, and Mastocytosis Australia’s practitioner list — these can support self-advocacy and clinician education.
A formal diagnosis isn’t required to begin symptom management. As long as red flags and other conditions are ruled out, you can start gentle interventions (e.g. clinical Pilates, compression, dietary changes) at home.
Even if finding a specialist is difficult, one informed provider in your care team can help guide and coordinate support across disciplines, so you’re not carrying the full burden of educating every professional you encounter.
Connect with Dr Megan Thomas and Bianca Comfort:
Find Bianca at her clinic, Comfort Psychology, and on Instagram @comfortpsychology.
Find Megan through her website, Dr Megan Thomas, or her clinic, Connected Health Alliance, and on socials @drmeganthomas and @connectedhealthalliance.
Things We Mentioned:
The Beighton Score System for EDS and the Hakim 5 questionnaire for hypermobility can be found on the Ehlers-Danlos Society website.
Studies on the overlap between EDS, Autism, and ADHD: Cederlöf et al., 2016; Dogan et al., 2011; Shiari et al., 2013; Csecs et al., 2020; Csecs et al., 2022
Research on “clinician-associated trauma” experienced by patients with EDS: Halverson, Penwell, & Francomano, 2023
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