I’ve lived well during most of my 16 years with fibromyalgia. Don’t confuse this as living pain-free; every day is not pain-free. The reality is that none of my days are spent without some pain, headaches, muscle spasms, difficulty thinking due to the accompanying symptom of brain fog and restricted ability to accomplish my general activities of daily living.
I spent two years and five visits to different physician specialists, each of whom performed multiple tests, in order to finally receive a diagnosis that fit into the spectrum of the invisible and chronic pain syndrome. During that first year of unrelenting pain I raged, I sobbed, I felt robbed of my life. I often pushed my body harder than its new, lowered endurance could handle because I felt I needed to “prove” I was “just fine, thank you.”
After I was diagnosed, I bought a book on fibromyalgia. Sixteen years ago, there were few guidelines on exactly what fibromyalgia was or what caused it. The book outlined the multiple symptoms experienced by those who lived with this syndrome and, even more importantly for me, it contained a path that outlined how to continue living well. In a user friendly, step-by step lesson plan, this plan started me on my journey of reframing my debilitation into liberation, empowering me to take back control of my new life by changing how I view what living meant for me. It taught me to begin self-advocating with people, including doctors. Despite my unrelenting pain, I made it my priority to slowly work on this plan, fitting it to my needs and pain triggers, all the while developing my personal survival toolkit. I kept a daily journal of everything I did for over a year, and I found that even with pain, I did not have stop everything in my life.
My friends and family stayed supportive during these years while feeling helpless and full of sorrow as they watched me struggle. Of course it wasn’t always smooth; their support came with some big bumps. Their continual “offer” of cures I “should” try were overwhelming. With hindsight, I understand now they were trying to help, and they too hoped I would get better. Their advice was usually offered in a compassionate conversation. During these conversations, I explained that I still knew my own body, I still lived inside it and I understood what hurts and what helps, but the stress of these “offers” triggered more pain. Sadly, I did lose one very important person in my life during the beginning months of my invisible pain, for a long time.
This person did not offer any cures. His opinion was clear — I just needed to “deal with it” and get on with life. He was adamant that I was creating a scene to get attention and was copping out by taking pain medications to lower my pain. Our relationship stopped being the close one it had been. He refused to accept that my pain syndrome was real and within a few months just stopped visiting and calling. Our relationship has never really recovered from those years so long ago. I’ve tried more than a few times to discuss his opinion about my experience and explain my syndrome to him, but it only served to create more tension between us. We have a new relationship now, one that doesn’t involve me discussing much about my fibromyalgia, and in return, he doesn’t offer me much advice or his opinions.
This was a gift in disguise for me. It allowed me to accept that living with an invisible illness causes confusion in many, if not most people, who don’t have one. I understand it is a waste of my limited energy to knowingly engage in negative discussions or situations of any kind, with anyone. With so little time to create positive joys in my life, I choose to focus on these moments. I choose to continue to live as well and as fully as I can each day.
To those on the spectrum of invisible illnesses, I believe these are the most important things you should learn, whether you’re newly diagnosed or have been living with invisible illness for years: journaling to learn your pain triggers, and letting go of negativity, instead embracing the positive people, places and thoughts of each moment.