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The Path Can Be Rough for Those of Us With Fibromyalgia

Reprinted with the kind permission of Barbara Keddy [1]

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 [2], 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.