By Rose Silvester in the On Eagles Wings Blog.
Rose Silvester is a consultant clinical psychologist based in Wellington, New Zealand, currently working at the Regional Personality Disorder Service at Capital & Coast District Health Board (CCDHB). In the context of her son’s illness she has immersed herself in the literature available on ME/CFS and models of care for chronic illness. She is engaged with the global ME/CFS community of researchers, clinicians and advocates and has initiated a national carers support network (NZ carers of kids with ME/CFS and related illness – NZcare4ME) as well as a local carers support group.
This article was first published in the June 2018 edition of the Journal of the New Zealand College of Clinical Psychologists (NZCCP).
My son lives behind the closed door of a dark room. He has been there for two and a half years, he is 17, he has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I cannot unlock the door.
Unlike most other people who have this problem, his onset was not abrupt and not obviously triggered by an assault to the immune system, such as by one of the many associated viruses, or by vaccination, or any event that created significant stress for the body. Toward the end of his primary years, I found myself frequently making excuses for him, for why he was very bright but struggled to be on task, why he went from being in the top 10 in the school cross country to being hundreds of metres behind the last kid, why at soccer following the half time sugar hit that revved the other kids up, he was listless and just watched as the ball rolled past. I blamed it on the insomnia, night sweats, and headaches because they were certainly there, and I thought to myself “kids are weird—they grow out of it.”
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