How do we understand and assess pain?

Dysautonomia (pronounced “dis – oughta – know – me – uh”) is an umbrella term used to describe several different neurological conditions caused by a malfunction of the autonomic nervous system.
The autonomic nervous system controls all of the involuntary bodily functions that we normally take for granted – regulation of our blood pressure, heart rate, respiratory rate, digestion, kidney function, temperature control, pupil constriction and dilation, etc. When the autonomic nerves are damaged, it can cause very serious problems in one or more of these systems.

Dysautonomia is not rare.

Did you know that Over 70 million people worldwide live with various forms of dysautonomia?

The anthropologist Clifford Geertz draws a distinction between thick and thin descriptions of phenomena. A thick description of a situation focuses not simply on the bare bones of the phenomenon being observed but also its context and the deep and meaningful activities of the participants engaging in the situation.

For example, if I smile at you like that, you smile back.
That’s nice.
Friendliness is wonderful.

If I smile at you, one level, I’m simply ……..
However, the meaning behind the gesture and the cultural context which emerges and into which it speaks, means that the simple gesture of smile has a whole range of meanings and possibilities. Then there is a range of emotions and social possibilities. I might be amused, I might be deceitful, I maybe being friendly, I might be saying farewell, and so on and so forth. Thick descriptions strive to see the whole of the thin. Thin descriptions, on the other hand, look only at the bear bones of the phenomenon.

To be human is to care. We care best when we belong.

Hi my name is Nicola Brown, one of the 70 million living with dysautonomia. My thick story is that whilst I have always been included in spaces I haven’t always felt welcomed. It is my belief that being human we have many births as we live. My most recent one happened in September of 2014, when I started testing for a cardiovascular condition with unknown etiology. I was in the midst of a Post Graduate Fellowship in Early Relational Health at an in person session when the symptoms first appeared. The next several years consisted of days filled with severe dis-ease and illness with no clear diagnosis due to the variability of symptoms. Going through infusions and alternative treatments made me re-evaluate my life: how I embrace self-fullness, the (connections) relationships I want to nurture, the legacy I want to live & the impact I want to stir in society.
The pain is all consuming. “What do you do all day?” was the question posed often by well meaning colleagues when I reduced my workload and subsequently resigned. As I focused on what was occurring within the rest of the world faded and highlighted that what was all consuming for me as I suffered was invisible to the doctor, colleague, family and friends. And because they couldn’t see anything, it was easier to turn away.



What started as an inner exploration, turned to a powerful expression of my LIFE PURPOSE. It was during this period that I grew in leaps and bounds — from reconnecting with my calling, surrounding myself with people who inspire and nurture me, to saying yes to activities that feed by being.

Living with _______ I am shaped by many factors, including
culture, ethnicity, environment, socioeconomic status, language, and faith. I learned to redesign life amidst a period that is painful, challenging and uncertain. What I got out of it, is a renewed sense of who I am, where I want to be and how I want to embrace life. I realised it was not about “leaving a legacy”, it was about LIVING A LEGACY.

This started my understanding of ALIGNMENT to one’s calling, the importance of finding and nurturing communities and creating the change that one’s presence can give. All these are what I infuse in the work I do and the people I connect with.

I grew as a person, as a daughter, as a niece, and as a community scientist after such a traumatic period. At a time of difficulty, I found my greatest strength — myself.