I am a Two Spirit art-creating, youth-centering, forest wandering, garden growing kick-ass crip with maternal roots of Lkwungen, Quw’utsun and Lummi descent and paternal roots of mixed-Euro ancestry. I use drawing and writing as a tool of empowerment and as a way of processing, accepting, and sharing where I’m at.
This article breaks some barriers and isolation of living with a chronic and invisible illness as a Two Spirit person. It’s enough to navigate everyday Fibro life, never mind how overwhelming it can be to try to explain it and how I am affected. Much of my brain and energy go to internally coping with pain, as well as other symptoms and with there being little awareness, it made sense to share some everyday life info in an accessible form.
What is Fibro/CSS?
Fibromyalgia is a Central Sensitization Syndrome (CSS). It is a condition that presents mainly in women 20-50 years of age and can also occur in children and men. Some people prefer only to use CSS in referring to their illness as it more clearly specifies the involvement of the Central Nervous System (CNS). The CNS consists of the brain, nerves, and spinal cord and therefore opens our minds to the true whole-body complexity of the illness. When the CNS is hyper-sensitized, the body-to-brain messengers (neurohormones) have communication failures and changes. Our pain messengers (substance P) are increased, leading the body to register and feel pain from everyday use of the body and surrounding stimuli – for some even a cool breeze, lightings, cold or hot temperatures, strong/chemical smells, clothing textures and food sensitivities can be read and therefore experienced as real pain.
Other neurohormonal imbalances and dysfunctions in FMS/CSS involve serotonin, norepinephrine, dopamine, and/or epinephrine, growth hormones, and the hypothalamic pituitary adrenal gland– causing a cascade of symptoms. Pain is usually the major symptom of Fibromyalgia Syndrome (FMS)/ CSS and is generally felt throughout the whole musculoskeletal make-up of the body and/or it can move around. Probably the next most common symptom is sleep disturbances, often resulting in non-restorative sleep and profound fatigue.
The word fibromyalgia can be deconstructed in Latin as:
“fibro” – connective tissue fibres
“my” – muscle
“al” – pain
“gia” – condition of
This is just a glimpse of what is going on. Currently there is no known cause or cure for FMS/CSS. Though FMS is often discussed under the umbrella of auto-immune illnesses, it is not known as an auto-immune illness (or at least, not yet). It is known to often co-exist with Myofascial Pain Syndrome and other auto-immune illnesses. It is common to be tested and/or monitored for other auto-immune illnesses with similar symptoms before reaching a FMS/CSS diagnosis. I won’t get into FMS diagnostics then, on average, it takes someone suffering with FMS/Css 5 years to reach a diagnosis.
To know more about FMS diagnostics I like the National Fibromyalgia Association (USA) website: http://www.fmaware.org/about-fibromyalgia/diagnosis/
To know more about Myofascial Pain Syndrome check out books by Devin Starlanyl: “Healing Through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction”, “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual” (1st and 2nd Edition) and “The Fibromyalgia Advocate: Getting the Support you need to cope with Fibromyalgia and Myofascial Pain Syndrome”
The following are selected from the zine Following the Beat of Our Wings, Two spirit Crip zine Issue 1: Fibro Warriors. To contact the author or order a copy of that zine send to: firstname.lastname@example.org
My name is Bitty. I am two-spirit and I make art. I have maternal Coast Salish roots of Lkwungen, Quw’utsun and Lummi descent and paternal roots of mixed Irish, French and Euro ancestry. The art I contributed about Matriarch Camp is a piece I drew to fundraise to sustain camp and out of a deep respect and gratitude to Ma’amtagila grandmother Tsastilqualus Ambers Umbas and the young matriarchs, warrior womxn and salmon protectors who hold the space that is Matriarch Camp.