My job is to train and educate our patient advocates to spread the word about chronic pain and fibromyalgia. My goals are to end societal stigma for chronic illness and garner attention so that more research into finding treatments becomes a reality. I want to be a fibromyalgia hero – someone who makes a difference.
I have fibromyalgia, chronic migraine and joint hyper-mobility. Two years ago, I had surgery on my skull and brain for a Chiari malformation and syringomyelia. Basically, I am a person who experiences more pain on a daily basis than most people. On top of my volunteer advocacy work, I work full time as a library administrator. Yes, I am busy.
The question I want to address here is, “How do you do advocacy work when you have chronic pain?” It is not necessarily easy, but it is doable. Yes, even YOU can do it! Read on for my secret of advocacy. It may be simpler than you imagined.
With chronic pain, finding the strength and motivation to do even the simplest of things is a challenge and so difficult for others to understand – that just getting out of bed and showered is a struggle. Before I have even left for my full-time job, I have to muster enough willpower and energy to shower and choose clothing, let alone put on makeup, feed and walk the dog, and brush my teeth. Writing this makes me cringe – how hard to admit that daily grooming is a struggle for me every day? But it is the truth. I own it. I will not be ashamed. And this is my advocacy work, right here in those few sentences. I own it. I will not be ashamed. This is my story.
I do advocacy work on top of my struggle to complete everyday life activities, while working full time. I live each day to the best of my abilities. I give myself a break, am not embarrassed to tell friends, family or coworkers that I am moving slowly, might have to beg off a date, or call in sick to work. It happens. It is my life. It is my story.
Today I woke up with pain all over and a headache so bad I was nauseated. I skipped the shower and washed my hair in the sink. I got dressed in a simple outfit, drank my coffee, and took a mini nap of 20 minutes before heading out to a work meeting. I even stopped to buy gas! I muster the strength when I need to. While participating in the meeting, my head was throbbing, and I felt sick to my stomach. So, I asked myself what is the best thing to do? Go on to my next meeting, not fully participating and be present, or risk embarrassment by telling my colleagues and supervisor that I need to go home? I chose the latter. I am writing this lying in bed with my iPhone, typing on the little screen between resting my eyes.
What does all of this have to do with advocacy? The secret to advocacy is telling our stories and relating our experiences – which tackle the very real stigma associated with having a chronic invisible illness. Advocacy and education can end stigmas. People may judge or more often just be ignorant of experiences different than their own. Social stigma is disapproval of someone based on socially characteristic grounds that are perceived, and serve to distinguish them, from other members of a society.
Many with chronic pain feel disapproval by others daily. “The pain and other symptoms can’t be that bad?” An amazing thing is that internal stigma can be as strong and as harmful as societal stigma. In fact, surveys in 2011 found that a large percentage of people surveyed found people with fibromyalgia to be courageous: “The surveys reveal that people with fibromyalgia have a misperception that society views them negatively. Fibromyalgia sufferers are viewed as courageous, according to 41 percent of the general public. Yet, only 17% of fibromyalgia patients believe that society views them as courageous.”
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My secret to advocacy is telling stories – not only to others but to myself! A key to living well with fibromyalgia is to give myself a break. I accept my story – that I am a person with more pain than most, who may have to work a bit harder to get showered and dressed each day. I am able to advocate for others because I have chosen to share the same empathy and compassion that I want others to show me, to myself. Self-compassion allows me to balance my illness with the realities of my life. I share my story so that people can better understand my experience and show me, and others like me, some compassion and empathy. Maybe even say that I am courageous or brave: a fibromyalgia hero!
It isn’t easy to be an advocate while juggling work and daily pain, but it is made easier by not being ashamed to tell my story. Having fibromyalgia, I am proud of every little thing I accomplish each day. Each time I share my story and experiences, I am doing advocacy work, because I am breaking down the stigma of being “different.” It may take me longer to get ready in the mornings, but that is ok. I may have to go home with a headache and miss a meeting – that is also ok. I do my best with what I have been given to deal with. I am my own fibromyalgia hero. Tell your story – and you, too, can be a fibromyalgia hero!
Nancy Ryan is the Director of the Leaders Against Pain Action Network, the advocacy arm of the National Fibromyalgia & Chronic Pain Association. The mission of the Leaders Against Pain Action Network is to represent and advocate on behalf of people affected by fibromyalgia and chronic pain conditions on critical issues.