The Invisible Struggle: Living with hEDS, POTS & MCAS
Why Understanding hEDS, POTS & MCAS Matters
Living with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) can feel like fighting a battle no one else can see.
Each of these conditions on its own is complex—but together, they form a perfect storm of multisystem dysfunction that impacts nearly every aspect of daily life. And the hardest part? Most people—including many medical professionals—still don’t understand how these conditions overlap or what it’s like to live with them.
hEDS: More Than Just Flexibility
While many associate hEDS with ‘being double-jointed,’ the reality is far more complex. It involves connective tissue instability that affects joints, skin, blood vessels, digestion, and even the nervous system.
Daily life with hEDS can mean unpredictable pain, joint dislocations, fatigue, migraines, and a sense of always feeling ‘off’—even when nothing shows up on test results. Learn more
POTS: When Standing Up Feels Like Running a Marathon
POTS causes your heart rate to spike abnormally when you stand up, often leading to dizziness,
nausea, sweating, and even fainting.
It turns everyday activities—like showering, shopping, or walking up stairs—into exhausting challenges. Many people are told it’s just anxiety, but this is a physical disorder rooted in autonomic nervous system dysfunction. Learn more
MCAS: The Immune System in Overdrive
MCAS causes the body’s mast cells to release chemicals (like histamine) too easily or too often. This results in allergiclike symptoms—rashes, flushing, stomach issues, or difficulty breathing—with no clear allergy trigger.
Flareups can happen at any time and are often triggered by stress, heat, smells, medications, or certain foods. It’s unpredictable, frustrating, and exhausting. Learn more
The Overlap: A Complicated Reality
For many people, these three conditions don’t happen in isolation—they overlap. And when they do, the result is a constant cycle of pain, fatigue, reactivity, and confusion.
One day might be manageable. The next could bring joint instability, a racing heart, and an allergiclike reaction all before breakfast.
It’s no wonder so many people are misdiagnosed, gaslit, or told ‘it’s all in your head.’
The Emotional Toll
Living with invisible illnesses often means masking your symptoms to appear ‘normal.’ It means facing disbelief from doctors, friends, employers—and sometimes even family.
Many people with hEDS, POTS & MCAS experience depression, anxiety, or trauma—not because the conditions are psychological, but because the system keeps failing them.
How ConnectED Can Help
The ConnectED Health Assessment App is designed to support people living with this invisible trio.
It helps you:
- Log symptoms across systems
- Identify patterns over time
- Create a structured report you can share with your doctor
It’s not a diagnostic tool—but it gives you a voice, language, and framework to be heard.
And sometimes, that’s the first step to getting your life back.If you’re living with this invisible struggle, know that you are not alone.
Download the ConnectED Health Assessment App today XXX—and take the first step toward clarity, support, and connection.
Think you may be living with Living with hEDS, POTS & MCAS? Download the ConnectED Health Assessment App today.
Medical Disclaimer
This content is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or qualified health provider regarding any medical condition.
FAQs
What is hEDS and how is it different from other EDS types?
hEDS (Hypermobile Ehlers-Danlos Syndrome) is a subtype of Ehlers-Danlos Syndrome characterised by systemic connective tissue instability—joint hypermobility, skin involvement, and often pain—diagnosed clinically rather than genetically.
Why do hEDS, POTS, and MCAS often occur together?
These conditions frequently cooccur—often called the “trifecta”—due to shared pathophysiological links between connective tissue, autonomic function, and mast cell activation.
What are the key symptoms and diagnostic criteria for each?
hEDS: Generalised joint hypermobility (Beighton score), musculoskeletal pain lasting longer than 3 months, systemic features (skin, fatigue, GI issues). POTS: Diagnosed with a heart rate increase of ≥30 bpm upon standing plus symptoms like dizziness and fatigue. MCAS: Defined by symptoms across at least two systems, mediator elevation during flareups, and symptom improvement with specific medications.
How common is POTS and what are treatment options?
In Australia, estimates suggest up to 3.4% of the population may be affected—translating to over 800,000 Australians living with POTS—especially in the wake of COVID19. Management typically includes lifestyle interventions like increasing fluids and salt, wearing compression garments, pacing physical activity, and, when needed, adding medications such as beta-blockers or fludrocortisone.
Can managing one condition help with the others?
Treating MCAS can improve POTS symptoms in those coaffected; similarly, addressing POTS may
ease hEDSrelated autonomic symptoms.
About the Author
Tracy Finnegan, RN, BSc is the Founder and Managing Director of ConnectED. A former ICU nurse and scientist, Tracy has lived experience with hEDS, POTS, MCAS, and Long COVID. After decades of misdiagnoses, she created the ConnectED Health App to empower patients to track symptoms, identify patterns, and advocate for accurate diagnoses and better care. Tracy brings firsthand experience, clinical expertise, and a patient-focused tool to support others