I'm a lover and a learner, not a fighter. After doing some reflection on a poll asked to those dealing with fibromyalgia for what name we would choose to call those with the diagnosis, I realized that I bristle to the appellation of Fibro Warriors, Fibro Fighters, and the like. The war metaphors just don't sit well with me.
While I understand that viewing oneself as a warrior is empowering (and if it resonates with you then use it), but for me, I feel in control and strong and courageous by learning about how my mind and bodywork. Due to this outlook, I have found avenues that are working for me so that I feel like I'm able to live my life fully.
Just Words
Some will say that these labels are just words. But as I am doing a lot more reflection through meditation, counseling, and writing, I have come to realize that the words I say out loud and in my head end up defining me.The fibromyalgia that is within me is not my enemy. I have come to believe that my nervous system has been on overdrive all of my life, right from in the womb due to my own mom coping with schizophrenia and bipolar (unknown to her until I was 16 or so). Her unstable mental health was the vibrant and awful hearth that lit my understanding of the world.
After my six weeks of intensive therapy through Mary Free Bed's Pain Program (my blog explaining this), I came to understand and believe that the pain that endlessly roves around my body, the brain fog that weighs heavy in my head, the extreme exhaustion that forces me to lay down comes from a friend of sorts-my nervous system. My nervous system kept me on alert as a child. It was protecting me from the random emotional and physical attacks my mom would have without any warning. As I've explained in past posts, I learned to live on that adrenalin right up until I couldn't function any longer last year. I actually thrived in some respects.
And so, I've chosen to view my nervous system as an overly protective friend who needs now to be assured that I am in fact safe and well. When I first listened to Dr. Daniel Clauw, the Director of the Chronic Pain; Fatigue Research Center at the University of Michigan, describe central sensitization/central pain disorder, I felt his metaphor for an amplifier turned on high really explained the reason for the fibromyalgia and interstitial cystitis pain I have.
 |
| Certainly, the way is not clearly marked. |
These metaphors create images in our minds; connecting what we know to better understand those things that aren't as understood to us. So, for me to understand this part of my life living with fibromyalgia, I have used the term journey. For the most part, I feel it fits the mentality I've taken. It allows for discovery, going into unknown territory, taking chances, having companions with me along the way, allowing guides to show me the way, figuring out what works best for me in this new situation or place that I'm in at this moment, etc. Journey to me involves work, courage, perseverance, hardships, discoveries, and so much more.
I will admit, there are times where I feel like I'm going through more of an odyssey-full of hardships and trials. Sometimes moving forward in a positive way. Other times stymied by a flare that brings my progress to a standstill or even pushing me back to take shelter. Often, it's felt like more of a quest -constantly searching to learn and to accomplish my goal of living as fully as possible.
 |
| Humorous image here, but when I'm down and out, it's not funny in the least. |
The other day, when talking to my daughter, she reminded me after a time of doubt and discouragement, that this journey isn't going to always go on the route I've chosen. Unexpected exhaustion hits in the middle of me having a great time. The fog rolls in, and I can't see or think clearly. Pain has led me into a dark alley and left me whimpering and doubting that I can continue. This too is all a part of my unchartered journey.
Metaphors Steer Our Thinking
For each of us facing a chronic illness of any type, taking time to really think about the metaphors we use is important. Also, that what we use needs to connect to who we are and want to be. In the medical research article, "Metaphors We Think With: The Role of Metaphor in Reasoning" published in Public Library of Science Journal, researchers Paul H. Thibodeau and Lera Boroditsky state that through the five experiments they performed, analyzing the role of metaphor and mindset, they found, "...that metaphors can have a powerful influence over how people attempt to solve complex problems and how they gather more information to make "well-informed" decisions."In addition, they discovered that "...the influence of the metaphorical framing is covert: people do not recognize metaphors as an influential aspect in their decisions." And so, it is essential that we think about the words we use to describe our illness and our relationship to it. Those words impact not only how we view our situation but also influence how we chose to react to it.
Other Possible Metaphors
In the article "From Battles to Journeys: Changing How We Talk About Illness and Cancer" by Vanessa Milne, Jeremy Petch & Maureen Taylor, the list a few different ways we can think a disease. In the article, they talk about a woman who referred to cancer in her body as cells that were out of tune with the rest of her body's cells. This got me thinking.
Needing to be Tuned-This week, I started taking ukulele lessons. Awkwardly, I tried to get my fingers not only pushing the string down fully but on the correct fret and not lazily touching the other strings. I have not yet gotten this to happen, so when I strummed the four strings in tandem with my teacher's notes, mine sounded sour and totally out of tune. It seems like that's much like my body and mind, currently. It's awkwardly trying to strum a tune, but it's really out of tune. To my surprise, I've been relishing my time in meditation more and more. I feel like it's bringing my mind and body back in harmony with one another.
In the article, they explain that often the metaphors come from a personal connection. Which makes sense, metaphors compare two unlike things-usually something one is really familiar with to something that is difficult to explain. So, your own life experiences could bring you a meaningful metaphor that helps you to explain and cope with illness.
Here is a list from their article (linked here):
- Dancing
- Thriver (vs survivor)
- Playing a chess match
- Running a marathon
- Weeding a garden
- A persona (the illness becomes a character to interact with)
And a few more I found:
- A building project
- A bike race (Lance Armstrong used this)
- A mental or physical match (similar to war phrasing but less violent)
- An unwelcome lodger
- An alien invasion
- Dr. Elena Semlow's talk on her research concerning metaphor use influence on people with serious illness
- Metaphor Menu
What is/are the metaphor(s) you use when thinking or talking about illness? Is it serving you well? Does it fortify you? Have you ever thought of the language you and your health advisors use?
Thank you for visiting my blog today.
I am committing to posting once a week on Fridays. However, as you know, my new normal means that some times I have to listen to my body and am not able to follow through as planned. Thank you for your understanding.
Click link Subscribe to Pain FULLY Living Weekly Posts by Email
