‘be clear about who you are - in the moment; give yourself the space and clarity to see what is happening around you - 

 Advice offered in a moment of awe of the privilege to hear the thoughts and perspectives of a woman who understood the art of unspoken communication and how the ‘a noisy self’ limited the ability to see.  

The tensions of my life and biology - unbearably noisy.

Questions long unanswered, and the conflict between what was seen and unseen adding to the noise. 

I made a decision … and on the  17th March 2018 - my birthday - I joined Class 13 at the THNK School of Creative Leadership. 

I didn’t know the answer to ‘what it meant to be healthy’, and I was existing in a constructed life which did not allow change. 

Standing in the cold, listening to ‘the invitation’ hearing the words spoken; then in THNK style, repeated. 

 I said yes. 

During those months #PersonBeforePatient grew from idea to a world of new possibilities.

2018: Leaving THNK; the parting advice - become part of the story. 

A year later Rare Disease Day 2022:  I ‘outed’ myself - shared my colours and showed a glimpse of what it was like to live with Meniere’s Disease - my personal invisible illness and disability. 

Meniere’s Disease (MD) is an inner ear disorder, characterized by stressful disabling symptoms complex of spontaneous episodic vertigo, sensorineural hearing loss, tinnitus and aural fullness.

The disease is chronic, and patients with MD living with an unpredictable condition feel anxiety and tension, a stress which can aggravate the symptoms already present. The psychological factors of this disease is significantly underestimated, with too many living a quality of life which is built on a foundation intolerable stress. 

In MD, there seem to exist a vicious circle of sufferers being  severely incapacitated by the illness, especially the psychological well-being, which manifest mainly with anxiety and depression, dominating the physical and environmental disturbances. 

People living with invisible illnesses or disabilities are vulnerable and subjected to abuse - ranging from comments about looking well, to the unseen domestic abuse within intimate relationship - someone who chooses to  harm.

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