From the outside, a person with fibromyalgia can be many things. To complete strangers who happen to see me on a good day when I manage to set my hair, pick out proper clothes and apply some makeup, I may look no different to any other healthy person. This probably explains the disparaging stares from strangers whenever I bypass the stairs or circle around to find the closest parking spot. On days when I am without the energy and desire to make myself publicly presentable, I notice that I get a different look. It’s almost as if people are not sure what to make of me. I look physically well enough but something seems off. I imagine they are wondering why I might be walking slower than most people or why I am leaning so heavily on my shopping trolley when I just entered the shop. On those days, it’s a mixed bag of reactions. I sometimes hear snickering as I walk away or I am surprised by the graciousness of strangers when they offer to help.
As I move into my circle with work colleagues or acquaintances, I am often met with well-intended jovial comments about how “lazy” I am when I opt to use the elevators instead of taking the stairs. Even though I know it’s from a playful place, it still leaves a sting. This group has some knowledge of my illness but has never been hit with the full fibro factor. To them, there’s a lingering unspoken question about why I have “special privileges” like working from home on occasion or why I never join in on team socials. It’s difficult for me cross the
boundary and fully explain the enormous impact of fibromyalgia on my life because I do not want to be seen as a “Debbie-downer.” I don’t want them to pity
Over the years, my friend circle has shrunk tremendously. There was a time when lost friends reacted with care and helpfulness. There was a time when I gave it my all to go out for a casual Sunday afternoon hangout, only to need a week to recover. This then led to multiple cancellations and my inability to join in on their special moments which turned their reaction to dismay. Last minute cancellations became the norm because I was always holding on to misplaced hope that I might be well enough to join. It’s a sad day when you are forced to say goodbye to friends. I am not sure if they were the fair weather kind of friends or I was reluctant to expose them to the storms that come with fibromyalgia. For the ones who are still in my life, I am grateful and certain that these are friendships for life.
Now that I am married and have moved away from home, I get the same sort of response from the rest of my family. There is undeniable concern with a tinge of helplessness. I am hesitant to expose them to my constant battle because I know that whatever they have seen pains them already. I know they would give anything to see me well again. So we find ourselves in a sacred dance, one where I gently side-step the gaping heartache I feel and twirl my hopes and positivity. They respond with a sashay of heartfelt well wishes and tiptoe over any observations on deteriorating health. It’s a soulful dance born out of love and marred by sadness.
My dear husband seems to carry an unfair amount of the fibromyalgia weight. He sees the effect of daily pain when I am unable to find a comfortable position after hours of tossing and turning. He is my only company as I am forced to say goodbye to all my old dreams and aspirations. He is my constant cheerleader and my ever-willing caretaker. Our lives together forever altered from the one we dreamed when we first met. We have an uninvited and unwelcome third wheel that we have to adjust to, and adjust we will. We don’t always get to have the lives we dream of, but getting to have a new life with the person you dreamed of is a tremendous blessing too.
Writing from the heart is difficult because I often want to protect the ones I love from the harsh reality of my everyday existence. I also want to protect myself from seeing life for what it really is. I truly believe that even with its many layers, it’s still possible to have a meaningful life with fibromyalgia. The journey might be different to the one you originally prepared for, but once you let go of the fear of the unknown destination, strap in and embrace the unexpected pit stops of deeper connections.