Tuesday 31 October 2017


My friend Colette and I spent a few hours earlier this month recording a conversation we had about life with auto-immunity, the complex relationship we have with language - the patient-physician dynamic as well as the social dance. I edited it, divided it into two parts, and posted it on YouTube.

Colette is truly brilliant at the jigsaw puzzle of piecing together life in broken particles - her mind sees connections and after 40 years of being in a health-wilderness herself, she is now able to offer extraordinary support to others in the wilderness. In my case, Colette offered up the term PTSD. I may never have applied that to myself but I can see now that Post Traumatic Stress is exactly what I suffer from. 

I had a difficult appointment at the hospital a few days ago. In August, while sick with a campylobacter infection that had spread into my bloodstream causing sepsis, my consultant visited. I had asked her registrar the day before about Benlysta, the first drug to ever be licensed for Lupus, and my consultant felt she needed to inform me personally that I was not sick enough to qualify for it. ‘You need raging disease to qualify’ were her words. Words familiar to me. I had heard her say them in 2008, during a hospital admission which included a painful lymph node biopsy. The drug in question then was Rituximab. I proceeded to become sick enough with the necessary raging disease in 2009 and have been on Rituximab ever since. Life opened up, I travelled, I finally did my MA and I wrote a book. I learned something of the language necessary to navigate this complex life. But I keep failing; it is never enough.

Whether I can or should still receive Rituximab is once again in question. Biologics are both expensive and in their long-term usage, an unknown. Exactly what it is doing to my immune system after eight years in subtle ways is as yet unclear. I was already in a shadowy place this year with the infections, four hospitalisations, PICC lines and now this uncertainty while my body fragments once more on old lines. Not knowing once again what the future holds means I cannot plan for a Christmas trip to see my brother in Singapore. It means battling depression and anxiety on a daily basis. It means walking inexorably towards getting worse while having to accept ‘worse’ is only so in my subjective opinion. Halloween’s ghosts come in many forms. 


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