The Woven Way

Hi, I’m Alice. Welcome to The Woven Way.

I’m a speech pathologist, IBCLC, educator and PhD researcher with a particular interest in the language we use to understand, explain and recognise experiences that aren’t always visible from the outside.

My research focuses on invisible chronic illness, particularly POTS, hypermobile Ehlers-Danlos syndrome (hEDS) and mast cell activation syndrome (MCAS), as well as neurodivergence, and on what happens when people have symptoms and experiences that don’t fit neatly into the language available to describe them.

I’m interested in questions like:

- Why can it be so difficult to explain what is happening in your body?

- What happens when symptoms cross multiple body systems, but healthcare is organised into specialties?

- How does the language used by health professionals, families, schools and wider society influence whether someone feels understood — or whether their experiences are recognised at all?

Alongside my research, I’m a qualified speech pathologist, IBCLC and teacher. I also have lived experience of these conditions, and I'm parenting children who also have them, so my interest in invisible illness isn’t purely academic. I know what it is like to be on the other side of the healthcare system, trying to understand complicated information, make connections between seemingly unrelated symptoms, communicate clearly with professionals, and explain an illness that other people cannot see.

That combination of research, professional knowledge and lived experience shapes The Woven Way. I’m particularly interested in making complicated information understandable without making it simplistic.

On this page, I’ll share and talk about research relating to POTS, hypermobile Ehlers-Danlos syndrome (hEDS), MCAS and invisible chronic illness more broadly — including new and interesting studies, what we currently know, where the evidence is less certain, and some of the questions researchers are still trying to answer.

I’ll also explore the language we use around chronic illness, disability and neurodivergence, and share parts of my own PhD research as it develops.

I hope this can be a place for making research a little more accessible, thinking critically about what we know (and what we don’t), and talking about what all of this means for the people actually living with these conditions.