My story and lived experiences
I’m Lorraine, a writer, speaker, storyteller and Workplace Disability & Narrative Coach in training and working on my coaching qualifications with The Workplace Inclusion Project.
My work is shaped by my own experience of living with chronic illness, including hypermobile Ehlers-Danlos Syndrome (hEDS), chronic pain, sight issues and fluctuating capacity.
For years, I knew something didn’t quite fit. I was curious, adaptable and constantly finding ways around challenges, but I didn’t have the language to explain why some things were harder than they appeared.
A diagnosis in 2022 gave me answers, but it also opened up bigger questions about identity, work, expectations and what it means to create a life that fits the person you actually are.
From Storytelling to Coaching
I have spent over 25 years working across storytelling, content, communication and creative industries.
Throughout my career, the thing that has always interested me most is people and how we communicate, how we make meaning from experiences and how stories shape the way we see ourselves and others.
Over time, I realised these skills could support people navigating change, uncertainty and the moments where the story they once lived by no longer fits.
That led me into coaching.
I now combine narrative coaching, systems thinking, lived experience and workplace understanding to support people and organisations to create more sustainable ways of living!
My coaching approach
I believe people are experts in their own lives. My role is not to tell you who to become or push you towards someone else’s version of success.
It's to help you explore:
What's happening now
What matters most to you at this moment
What patterns might be keeping you from moving
What are the realistic ways forward
My approach is curious, compassionate and practical. Because support has to work in real life not just on paper.
What is Ehlers-Danlos Syndrome?
In 2022, in my early 40s, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic connective tissue condition that affects collagen which is the protein that provides structure and support throughout the body. So yes, late diagnosed and very surprising to realise how much I had been carrying.
There are currently 13 (might be 14) recognised types of Ehlers-Danlos Syndromes, each affecting the body in different ways. Hypermobile EDS is one of the most common types and can affect joints, muscles, connective tissues and many other systems of the body.
For me, living with hEDS means navigating chronic pain, fatigue, migraines, joint issues, muscle tension, high myopia and the ongoing adjustments that come with fluctuating energy and capacity.
It has changed the way I understand resilience. Not as pushing through at all costs, but as learning to listen, adapt and create ways of living and working that acknowledge the reality of the body you have. My first retinal detachment happened in 2023 and yes, after laser surgery to scar my retina to help me see, I do see everything very differently.
This lived experience shapes my coaching approach. I understand what it is like when your capacity changes, when the outside world does not always see what is happening, and when you need to rethink what “normal” looks like.
Accepting my disabilities and chronic conditions is a learning journey for me and I often use social media as a form of expression and processing the impact it has on me and my life.
Chronic Pain
I am in constant pain from headaches and migraine, joint pain, bruises, fascia pain, eye strain, muscle issues and silly injuries. It feels like flu all over, all the time.
Chronic Eyes
My eyes need help and require powerful lenses to help me see. I have a high myopia prescription. I had a detached retina in 2023 and had multiple laser surgeries to save my sight.
Chronic Fatigue
My body spends a lot of energy trying to simply function and live day to day in pain. This is very tiring and takes a lot of fuel and rest.
Frequently Asked Questions
Here are some answers to some of the most common questions I get asked. To help me with my mental load, please be sweet and read them because it is tiring to repeat myself.
Can EDS be cured?
No, there is no cure. It is a genetic mutation affecting connective tissue.
Can you have an operation?
Short answer is no. Connective tissue is everywhere, all over your body so no operation will stop it. However I have had operations to cause scarring to save my sight so sometimes some operations do help.
What can be done?
Currently I can manage my condition by being gentle with myself and pacing my activities. I work hard on reducing stress in a physical and emotional sense. I engage very rarely with people and events because it takes a lot of energy from me. I use a number of alternative therapies, meditation, diet, supplements and mental health resilience tool kits to keep my body, brain and soul going.
Do you have other issues?
Yes! There are a number of comorbidities that come with hEDS including PoTS, MCAS. I also have other issues including Sluder's Neuralgia, Endometriosis, Neurodivergence (likely HSP with HSS), Scoliosis. I am uncovering more and more issues and they seem to be related to hEDS.
How do you stay so positive?
I have known only pain, only confusion but I have always been a person to find a reason to smile, make a joke, have a laugh. Life living in pain has taught me to take risks (within reason), to find the joy and celebrate the small things. I am very successful because I thrive in spite of my condition and my pain.
I do feel scared and anxious a lot of the time but I have learnt to deal with so many scary situations and I am an advocate for mental health therapy and professional help and support.
Why are you called a Zebra?
"When you hear hoof beats behind you, don't expect to see a zebra." Medical students are given this quote as a way to let them know that they should look for a common diagnosis for the symptoms they are given instead of the possibility of it being a rare case. This is why people with EDS refer to themselves as Zebras. I have spent a lifetime in and out of medical clinics being told that my blood tests are normal, that I simply have anxiety, that my joints being so loose is normal and an asset. After 40 years I finally got a diagnosis!
What is pain?
An excellent question and one that I am working on. I have written a book about Pain to learn about it. Pain is complex, it is both physical and emotional. It is a vast topic to pin down but I am curious about pain and how it affects me and my own personality.
Why even get diagnosed?
It may seem strange to want a diagnosis for a condition that has no cure and currently no patient pathway. However, I am strongly in favour of diagnosis because in my case it meant the retinal surgeon changed their surgery options for me knowing that laser surgery was a less risky option for me and my eye tissues! Diagnosis means better informed surgery and medical care!
Outside of work
When I’m not writing, coaching or speaking, you’ll usually find me:
volunteering with Riding for the Disabled Association
spending time with cats (lots of time) usually napping while stroking toe beans
listening to music of all genres
Getting creative with words, paper and more
moving my body in ways that work for me - I am also a Dance Assure Well being coach
finding small moments of joy (and probably snacks - ok most definitely lots of snacks)
Disability Inclusion and Advocacy
Alongside my coaching work, I co-founded CEMS ACCESS (Advocacy, Community, Care, Empathy, Support, Sharing), a peer support network for students and alumni navigating chronic conditions across an international community.
I have also spoken internationally about chronic illness, disability, identity and inclusion, including at the ESTORIL Conferences and with audiences across the UK and Europe.
