CIRS, EM, and Acts of Resistance
When I was working on a degree in Narrative Therapy and studying abroad in Australia, I learned about a concept that was novel to me. This idea was termed “acts of resistance”. Chronic inflammatory response syndrome and erythromelalgia had yet to enter my life- but even still- this idea stuck out to me as if it was an oasis in a unforgiving desert. The idea of “acts of resistance” posits that people are always responding when faced when faced with injustice. The general gist is that whenever people experience trauma, loss, or pain, they engage in small acts of resistance.
Acts of resistance can be quite sneaky as they are often not recognized by those engaging in them. When an EM patient shoves an extra pair of shoes into a backpack, it may not feel like a profound act. Using sticky notes to combat CIRS brain fog that has shaved away your sharpness may elicit many feelings, but few people I’ve spoken to immediately describe the act as taking a stand for something you hold dear. Sussing out acts of resistance can feel akin to being a detective on a case that circles back to you.
To make acts of resistance even more of a trickster to track down, they may not be recognized by the professionals a person is working with. While deep into EM and CIRS, I discovered a cane that doubled as a stool. I felt a surge of excitement. I explained to my therapist that I could now foreseeably navigate airports again! For me this meant mobility and a reclamation of independence as well as travel. My therapist- who was trained in narrative ways of working (AKA- an expert at looking for acts of resistance)- couldn’t get past the fact that airports were filled with chairs. “Why would you need to carry a stool?” she questioned. I felt as if I was a bright red helium balloon determined to rise who had been suddenly deflated. Clearly, she had never stood in a security line or navigated her way through customs with feet on fire. I illustrate this point only to show how difficult acts of resistance can be to catch. I’m guessing you have had a medical professional, therapist, friend or even a family member that was oblivious to your acts of resistance. Feeling generally defeated by my disease processes, I never found a way to tell my therapist I felt wounded and invalidated by her dismissal of my “cane/stool combo” magical discovery. It would be three years after our initial conversation that I would eventually purchase the mobility aid. This eventual purchasing, despite the long delay, was no doubt an act of resistance.
At times, people will engage in grand and sweeping acts of resistance, but my acts of resistance against the disease processes that had invaded my life and the pain that they brought with them often looked smaller and more subtle but were significant, nonetheless. While we are always engaging in acts of resistance when faced with injustice, there is no need for these acts to be grand. I believe there may be something grand about them not being grand, yet when subtle they may require even more skilled detective work to snoop out.
Here is a list of a few CIRS and EM acts of resistance that now looking back I can see I engaged. As you read through them, note what they spur for you. Do they remind you of any of your own acts of resistance?
-I have continued gentle yoga- an act of resistance against becoming immobile as well as a refusal to lose another thing I love.
-I have refused unneeded help- an act of resistance against becoming dependent.
-I have learned to ask for help when I need it- an act of resistance against finding value only in what I can give to others.
-I made angry art- an act of resistance against numbing out and not feeling my feelings.
-I have carried extra shoes with us so that I could change them throughout the day as needed- an act of resistance against not being able to complete my education.
-I began talking openly about my struggle, pain, and losses- an act of resistance against shame.
-I learned voice dictation when I could no longer type- an act of resistance against losing not only employment but more importantly an act of resistance against losing my voice.
-I put encouraging sticky notes up all over the house- an act of resistance against despair.
Like Sherlock Holmes, may you suss out your acts of resistance. Engaging in even the tiniest acts of resistance are your unique responses to living large despite the dictates of illness.
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
Read about healing my chronic inflammatory response syndrome (CIRS) and how that connects to EM here.
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