Pacing isn't giving up. It's how I build a life that works for me.

FEELING STABLE

A life of adapting

I've had hypermobility and postural orthostatic tachycardia syndrome (PoTS) all my life. They worsened significantly in my early twenties, bringing severe fatigue, joint instability, brain fog, digestive symptoms and pain. I managed to complete a first-class Bachelor of Science (BSc) degree in Environmental Health and work in the field for several years, but by 28 I was using a wheelchair and had been medically retired.

It took another few years to get the hang of how to exercise and how to pace myself. And to be honest, I'm still learning!

Finding answers took years

As a child I had lots of injuries, fatigue, and felt faint when standing or getting too hot. Even after needing six months off school at ten because of severe hip pain, I was told it was probably "middle child syndrome".

By my mid-twenties, something was clearly very wrong. At 24, I was diagnosed with a hypermobility syndrome, possibly Ehlers-Danlos syndrome (EDS), and about a year later with PoTS. Before that, my symptoms had been labelled psychosomatic, and I had been referred for a possible inpatient psychiatric admission. By the pre-admission assessment, the PoTS diagnosis had been made and the assessing professionals agreed admission wasn't needed.

The hardest part isn't always the symptoms

Adapting to a life that is far smaller than most is hard: taking the rest I need, making decisions based on what I can manage rather than just doing things, and recognising that I have intrinsic worth even when I can't do as much or have to cancel plans because of my health.

One of the biggest misunderstandings is about pacing. It takes far more self-discipline to restrict and plan my activities than to push through, which often only makes my symptoms worse. Society, and some healthcare professionals, can see pacing as "giving up". For me, it has been the single most useful tool in managing my health.

Learning what works for my body

Support from the Hypermobility Syndromes Association, and learning how to pace and exercise in a way that works for me, made an enormous difference. Two lightbulb moments were: "If I can't control an exercise/movement, I need to stop" and "All movement done with control counts as constructive exercise".

I'm now 44 and in another period of change. My body can't cope with what it once could, so I'm downsizing and planning to move into a purpose-built wheelchair-accessible annexe near family. I'm also changing how I run my business to free up more energy for the creative work I love. Sometimes improving life in the long term means going through a particularly demanding transition first.

Turning misunderstandings into communication

I founded Stickman Communications because I kept encountering misunderstandings about my conditions. Through stick-figure cartoons and straightforward explanations, I create resources that help disabled people and healthcare professionals communicate positively about symptoms, needs and different conditions.

My products, blogs and talks have been used around the world. The aim is to make difficult conversations easier and to help people be understood.

What I would tell someone else

It takes time to understand your health conditions, how they affect you and how to help yourself. But stick with it. Understanding how my body works and how to look after it has been incredibly rewarding. I have a happy and fulfilled life, even though it is vastly different from what I expected. Patient groups with a self-management focus can be really useful.

Instagram: @stickmancomms • Facebook: Stickman Communications • LinkedIn: Hannah Ensor

A note from mOI

Why this matters to mOI

mOI was developed to address many of the challenges Hannah describes: symptoms that fluctuate between appointments, important details scattered across years of care, and the effort of explaining complex, often invisible conditions to different professionals. By bringing symptom records, treatments and health results together over time, mOI aims to help people recognise patterns, communicate what matters and arrive at appointments better prepared. It is designed to support self-management and more informed conversations, not replace clinical care or the individual pacing strategies that work for each person.

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