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The Path Can Be Rough for Those of Us With Fibromyalgia

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Reprinted with the kind permission of Barbara Keddy

The comments I have received over these many years about the struggles and challenges we have experienced living with chronic pain, chronic fatigue, sleeplessness, itching, bowel upsets, a host of other symptoms along with hyper-vigilance, anxiety and depression have inspired me to think about our test of courage and bravery.

I am frequently denigrating myself for my lack of courage while acknowledging the ways in which I do not have self compassion. I live with privilege: a white, heterosexual woman with a supporting partner and enough money to live comfortably, so I ask myself why I am subject to so much anxiety. I am not poor, discriminated against for my color or sexual orientation. I am not homeless, a refugee, or fearful for my life. I live in a country that gives me comfort because we are not (yet) being bombed and my sons are not sent to war. I have access to health care.

The only ways in which I am discriminated against are those of ageism; but then, everyone fortunate enough to live long enough will experience this discrimination. Many people living in privileged countries experience racism, sexism, homophobia, classism while living with chronic conditions such as fibromyalgia. The women and children living in war torn countries must be experiencing severe symptoms of PTSD accompanied by fibromyalgia. Those stories are not being told.

Why then do I often believe I personally have such a rough road to travel? It seems to me it is because every day is pain filled, which depletes my courage and energy. Each new symptom (and yes! after 50 years of living with fibromyalgia, I still experience ‘new’ symptoms) continues to often frighten me instead of working with my sensible daily program of talking to the pain, breathing, meditating and telling myself “it is what it is,” accept it, and stop the struggling.

As I read the newspapers and realize we are at war once again, I think to the issues that precipitated this world-wide anger, aggression, hatred, violence and wonder about the future of my grandchildren. I do not watch the news on TV as the images are too frightening. Yet, I must continue to be informed. Reading about it is less stressful than the visual.

I can’t spend any more money on wasted ‘alternative’ strategies like homeopathic concoctions or acupuncture or herbs. I can’t find an allopathic medicine that the doctor might prescribe that will calm an over-active, hyper-aroused central nervous system. It is within myself that I must work to find some inkling of courage. Are we hyper-sensitive people with fibromyalgia the un-brave? Or are we the ones who suffer from too much empathy?

The world can use more empathy. We aren’t victims.  We are trying to find that doorway that we can open just a fraction to lead us into some semblance of stability with a nervous system gone awry. The doorway is there; we need to push it open with our breath, our taming of wild thoughts that will lead us into a more peaceful place.

I am challenging myself to become more brave as the world becomes more fearful.

About the AuthorBarbara Keddy, BSc.N., M.A., Ph.D., Professor Emerita, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada, has lived with fibromyalgia for more than 40 years. Barbara has been interested in social justice issues throughout her professional career, with particular focus on women’s health, resulting in her book Women and Fibromyalgia:  Living with an Invisible Dis-ease. 

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3 thoughts on “The Path Can Be Rough for Those of Us With Fibromyalgia”

  1. lisamary101 says:

    I also have thought about those living with fibro who are in war zones, natural disasters, or severely marginalized by one circumstance or another. I think of my maternal grandmother, who I strongly suspect had fibro, raising five children with none of the conveniences I view as necessities. I just can’t see myself as anything less, or “un-brave” as you put it. We do what we have to do. It is a strangely helpful perspective, one I learned years ago when I was a paramedic and my partner one day was a Vietnam veteran. He said he could face the worst a squad call could throw at him because at least nobody was shooting at him. (This was the 90’s, and nobody was shooting at the ambulances back then) So when I am having a really bad day, I think of Mike, and I say to myself, “this may totally suck, but at least nobody is shooting at me.”

  2. rakiethebird says:

    Dear Barbara, your story sounds very personally familiar. We are the privileged few with education, good health care and loving family support. This fuels our own efforts to martial on. But sometimes even that isn’t enough. The relentlessness of pain eats away at us. It fuels our guilt whenever we stand back to rest or lick our wounds. Then guilt becomes another point of suffering. We know we SHOULD be thinner, more active, more engaged just because we are the lucky ones. We drive ourselves with our guilt then collapse under it. Now fear is added to guilt. Public opinion and short-sighted legislation threatens to deny us the meds prescribed to us long ago when they were considered a panacea. Even though we have racked up decades of controlled use of a powerful prescription, been hypervigilant not to abuse it, strictly keeping within the rules, the threat of it being taken away without an alternative looms like a black cloud over our heads. We have all been labelled “addicts”, despite the evidence to the contrary. We will be denied potentially effective substitutes because the substance within them is “illegal.” Without pain control, I will be forced to leave my job, be cut off from my health insurance and will face years of convincing a cold government process whose goal is to deny me support. Oh yes, they will argue. You can still fall back on the support of your family. But it will condemn them too -to watching as I go downhill in in a death spiral of pain and depression. How many marriages have been destroyed by the “flavor of the month” perpetual war on drugs? But then I SHOULD consider myself lucky, right? So many more of us don’t even have what I have. And then the guilt returns….

  3. LOVED says:

    Excellent article. I, too, am constantly struggling with guilt and depression. I have had fibro for 35+ years and do not even seem to have any times when feeling better. In other words, never out of a cycle. I have a dear friend who is determined to find a “cure” for me. I always try to polite and thank her but keep pointing out there is no cure. I have wasted too much time and money on gimmicks, etc. The other irritation, of course, is the fighting for pain medication. Fortunately I have a supportive doctor who understands and prescribes what I need. I live in fear of the FDA making more stupid rulings. We are not addicts and should not be at the mercy or the target of their policies. Fibromyalgia, along with other chronic pain conditions, needs a stronger voice in the medical community and government. I was told that most doctors receive a minimum of training in pain medicine.

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