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Fibromyalgia and Living in a Chaotic World

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Reprinted with the kind permission of Barbara Keddy

Courage is resistance to fear, mastery of fear – not absence of fear. ~ Mark Twain

All of us with fibromyalgia suffer from repressed emotions and are coping with overstimulation and sensory processing sensitivity. Never has it been so challenging as it has been in the past two weeks with the world on the brink of disaster. What is to be done?
We can’t continue to watch the news on a regular basis without feeling the brunt of worldwide fear, anxieties, hatred, rage, and turmoil. We also can’t hide in isolation from outside influences. We are situated betwixt and between our own personal lifelong anxieties and fearful for the volatile and chaotic nature of current politics.
I have grappled with the realization that we with fibromyalgia have certain personality characteristics in common while at the same time there are many differences among us. Personally, I am an introvert while needing to be around people on my own terms. I have a lively interest in people, but no one is all one thing. Good and bad, simple and complex, happy and sad, afraid and courageous- it’s all a mix.
But, we all have in common our anxiety, hyper-vigilance, and overly emphatic nature. For those reasons, we are sensitive to injustice. We are intuitive about the good and the bad in others and quick to judge ourselves, particularly if we believe we are not courageous. We live in fear we will be found lacking in strength of character, deriding ourselves over even mentioning our symptoms of pain and fatigue.
Living with a chronic dis-ease usually changes our lifestyle and abilities. While in my previous life, I was ‘out there’ fighting for issues of social justice: women’s rights, LGBT issues, race, labor and worker’s groups, I can no longer dredge up the energy, nor do I have the physical ability. From these marginalized groups of people, I would find kindred spirits as they too would no doubt suffer from fibromyalgia in great numbers.
But I leave the struggles to the younger generation although this generation has little to hope for and so little to believe in. My thoughts go to my grandchildren and the chaos they have inherited.
Given that people with fibromyalgia have exceptionally sensitive (pathologically so!) central nervous systems, our inner turmoil leads to flare-ups along with depression and anxiety. Thinking about those who are suffering in war torn countries and no doubt have developed PTSD, who live hopelessly with diseases and despair, I have little compassion for myself living in a peaceful country with universal health care.
Happiness isn’t a natural state for me. I don’t trust it. My fury at injustice must be turned to self-gentleness and I must stop imagining the darkest possible scenario. Currently the volume in my central nervous system is turned up high. So, hope is not an easy trait to develop.
Then I watch those younger and more fit people who are resisting injustice, and I experience a surge of willingness to detach from the bonds that keep my central sensitization in a state of upheaval. I am practicing letting go and living with a bit of hope.

Barbara Keddy is Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. Barba holds a BS in Nursing and an MA and PhD in Sociology. She is married, a mother and grandmother living on the east coast of Canada. Barbara has lived with fibromyalgia for about 40 years.

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2 thoughts on “Fibromyalgia and Living in a Chaotic World”

  1. rakiethebird says:

    I heartily agree that our struggle with chronic pain and dis-ease is and will be sorely challenged in the years ahead in this time of turmoil and rank evil. I can’t and WILL NOT agree with completely withdrawing from it to let others mount the resistance because of our disability. To do that is to cede control to that very evil and increase our anxiety, pain and dis-ease. History shows us what happens when a segment of the population does not engage the enemy when it is still possible to make an impact. Engagement and resistance, however, can be done without depleting of our already low energy levels and painful lives. In fact, I would argue NOT engaging the issues that have the potential to destroy our habitat and civilization will cause even greater anxiety and pain because of feelings of helplessness in the face of these threats to life and limb. I would argue that these harrowing times are an opportunity to exercise our imaginations and ability to make choices on HOW we mount our own resistance to the evil that has been loosed. I would also argue that if we just withdraw and let others do our fighting we risk being the first victims of the oligarchy of greed that has indeed targeted the chronically ill for elimination.

    I urge all who are experiencing fear and terror of what may soon engulf us to download a document at and read it carefully to develop your own strategy of resistance. It is short (26 pages) and easy to read. It focuses on the simple premise that if we hold our elected representatives at the local, state and national levels accountable for checking and blocking the actions of the insane power-drunk maniacs at the top, we will topple the evil that threatens our very lives. Their strategy calls upon people to engage through letter writing, calling one’s representatives and showing up at town halls and meetings to voice your objections and opposition to institutionalizing hate, poverty and bigotry. It is founded on the principle that, until our power of the vote is taken from us, (and it will be if we do not collectively and individually resist) WE STILL ultimately CALL THE SHOTS.

    We do not need to push ourselves beyond our capacities to spend 1 HOUR, EVERY DAY communicating with our representatives and telling them in no uncertain terms that we will kill their political careers unless THEY LISTEN TO THEIR CONSTITUENTS. We don’t have to drain our meager resources in demonstrations or legal gatherings to exercise our 1st Amendment rights under the Constitution. All this can be done from the comfort of our armchairs.

    If you can, donate, even a small amount, to organizations like the ACLU, who will put your money to good use. Contribute to candidates of moral compass who have the potential to replace cronies that are making themselves rich from the swag of their corporate lords in 2018. If every one of us puts in 1 hour a day being an active resistance fighter, WE WILL PREVAIL! And you will be rewarded by the awareness that you are exercising the control you can without sacrificing your life and health. More than any other group, this is OUR FIGHT, and the same skills that help us navigate life in a world of normals are tailor-made for mounting a resistance that will collectively topple the forces of evil.

  2. Tillybeans says:

    Your article is so appropriate to our times. I haven’t felt good since our election. Like you, my emotions are so exaggerated, among fear, compassion, and outrage. I try to back off and let the younger ones carry on the fight, but then I suffer from guilt that I’m not doing my share. So thanks for letting me know I’m not alone with all this.

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