Some members are known as MS; others, diabetes. There are clans with rheumatoid arthritis, lupus, or myasthenia gravis. Impressive names, tongue twisters, spelling bee stumpers, or pretty words on paper…”A rose by any other name is still a rose.” Or thorn? Whatever the diagnostic name, welcome to the inbred Mafia Family of Invisible Chronic Illness, natural crimes against healthy humanity.
The various cousins, siblings, and spouses of this large dysfunctional family share similar traits: pain, invisible disability, financial strain, social misunderstanding, and interrupted lives…to name just a few.
Some inherit chronic status genetically. Others are adopted in perverse random. In a single slow-motion, dare-to-breathe moment, the neuro’s words, “I believe you have Stiffman Syndrome,” forever changed my world. Reality rasped in a throaty Gotti, “gotcha,” “Once you are in the family, Debbie, there is no way out,” as I looked at the written SPS diagnosis on my confirmed chronic adoption. Diabetes is my underboss.
As a member of the Invisible Chronic Illness Family, I am still hoping for Elliot Ness, a cure…untouchable. For now, I deal in drugs…temporary medication deflection (if lucky) for whatever ails my SPS branch of the chronic illness family tree.
I bury my roots deep. I work on nourishing my spirit in the wellsprings of hope, determination, humor, and faith. Daily, I redefine my physical limits, always reaching. I fight back, a rebel with causes. Some of my causes: to always try, achievement is in the effort; to not let my illnesses be my identity; reaching out, giving enriches my life; to dream, laugh, love, and create my own happiness. I pray…a lot. 😉
Even though I am rebellious, “the family” refuses to disown me. I still look onward and live forward…”in spite of.”
“I have built my organization upon fear.” ~Al Capone~
“Courage is one step ahead of fear.” ~Coleman Young~
I think it is important to be involved in invisible illness awareness week. Millions are affected by an invisible illness. Living within physical limitations and the emotional expense required is not only consuming, but overwhelming at times. Not “looking sick” adds to frustration and misunderstanding not just for the “afflicted,” but also for the “affected.”
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