When Symptoms Don’t Fit the System

Deoné Duffy
Mar 23
5 min read

Updated: May 17

Exploring the emerging pattern linking fatigue, hypermobility, POTS, allergies, and post-viral conditions — and why so many people are falling through the gaps

This article offers an honest and nuanced exploration of the gaps in how complex, multisystem conditions are understood and supported. I weave my experience with emerging clinical conversations to highlight where current systems fall short and where meaningful change is possible.

A colourful abstract watercolour illustration of a human silhouette, with bright yellows, pinks, and blues across the upper body and darker swirling blue‑purple shapes concentrated around the torso and lower body, blending into the legs.

An Emerging Pattern

Neuroconnectedness, my blog, rests on the belief that nothing about us exist in isolation. Not our thoughts, bodies, relationships, environments and certainly not our struggles. Over recent years, I have noticed a pattern, both in my own life and in those of people around me: a cluster of symptoms and experiences that don’t fit neatly into traditional medical pathways yet profoundly affect daily functioning and identity.

For many, life changed dramatically after COVID. People often report combinations of chronic fatigue, fibromyalgia, POTS, long-COVID, and interestingly also neurodivergence and hypermobility. Alongside these sit worsening allergies, food intolerances, migraines, asthma, mood fluctuations, hormone issues … the list is long and familiar.

Clinicians are beginning to explore these links too. Events like the Royal Society of Medicine’s day on The Invisible Impact of Covid-19 on Hypermobility Syndromes and Neurodivergence – Bodies, Brain, and Burnout show that this conversation is gaining momentum. Despite apparent rising cases and increasing workplace absences due to complex chronic conditions, there still does not seem to be a coordinated national focus. That is, apart from long COVID, which to my knowledge is the only area with dedicated national pathways and services.

A System Built for Parts, Not Wholes

I am not a clinician, and nothing in this article replaces medical guidance. But as a coach and someone who has lived this first-hand, I see how hard it is for people to find support within a system organised into narrow specialisations.

Complex, multisystem conditions challenge medical research and diagnosis. They span bodily systems, making holistic studies difficult to design and even harder to implement within existing structures. That is important to realise, because where we do not have good scientific studies, it is easy to conclude that what we are experiencing is not real. That is a false conclusion, it is like saying I did not eat any breakfast because you did not ask me if I did.

My own journey reflects this: across several years I was suspected of having a wide range of seemingly unrelated conditions: autism, ADHD, early perimenopause, mood disorders, dysautonomia, hypermobility, chronic fatigue, musculoskeletal issues, and more. Each symptom was investigated separately, generating a staggering number of appointments, scans, and tests, yet never producing a coherent picture.

All of this also costs a lot of money, money that could have been better spent elsewhere had someone noticed the whole picture earlier on.

Ultimately, the diagnoses I received were autism, hypermobility spectrum disorder, and dysautonomia and out of these many suspect that hypermobility is the linking factor with a common side-kick; MCAS.

Where MCAS Fits into the Picture

The emerging conversation includes a lesser-known condition called Mast Cell Activation Syndrome (MCAS). It has appeared in clinical literature over the past decade, but its diagnostic criteria remain under debate.

Two main schools of thought exist: one requiring more classical anaphylactic patterns and strict lab criteria, and one that relies more on clinical history, symptom clusters, and the ruling out of other causes.

What matters for many people is that following the second approach, clinical diagnosis supported by response to treatment, can make a profound difference.

I cannot say whether my transformation came from medication alone, but starting on H1 and H2 antihistamines, a mast cell stabiliser, and low‑dose naltrexone under the guidance of a private GP quietened my symptoms enough that I finally had the bandwidth to explore lifestyle changes. I worked with a functional nutritionist, learned my flare triggers, and began gently reintroducing some of them as my baseline improved.

Medication wasn’t a magic bullet, but it lifted the fog.

Regaining Capacity

Before treatment, I was preparing myself for the possibility that I might never function day‑to‑day without major adjustments.

When my symptoms were framed solely as mental health issues, it influenced how I understood myself and how others understood me.

Don’t get me wrong, talking therapies helped emotionally, something I still value and recommend, but they didn’t resolve what was making life so hard.

The change that followed treatment was significant: clearer thinking, reliable energy, the ability to plan and follow through, the capacity to exercise again, and the feeling of being present with my family rather than distant and overwhelmed. It felt like I was returning to myself.

This transformation is why clinicians, charities, and patient groups continue advocating for earlier consideration of MCAS in complex chronic illness. For some, it is life‑changing.

Many experience what I experienced and call it burnout. It turns out work played a part in what I experienced, but it wasn't the full story.

It is very hard to get better while all the normal demands on our time and energy continue and so it is necessary to carefully consider what to prioritise on the road to something sustainable. The good news is that for some there may be more support out there than initially thought.

Why This Matters

The current medical system and cultural understanding is not designed to see people like us clearly. But that doesn’t mean support isn’t possible, it merely means the right questions have not been asked yet.

Complex conditions do not exist in silos. Our bodies, brains, and environments shape each other constantly. Through my coaching work, which is around all things change, I see how shifts in identity, relationships, health, and work influence one another, and how small steps can unlock meaningful progress.

Because of my own journey, I am making myself available to people in the “I have no energy or capacity” space. Later this year, I will launch a group coaching series designed for those navigating this terrain: creating time to pause, think, and choose next steps that feel possible, supported, and in line with current capacity.

If this speaks to you, you can register your interest by completing a form.

To others who want some more information or want to get involved in some way, here are a few links to information sources and charities you could support:

Charities

Medical Society:

The British Autonomic Society

Podcasts:

Neuroconnectedness: Thought to feeling. Body to brain. Me to you. Us to our systems.

About the Author

Deoné Duffy smiling with their chin resting on their hand against a light background.

Deoné Duffy is a coach and speaker who works with individuals, leaders and organisations who are ready to ask difficult questions, think differently and do differently.

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