An illness like fibromyalgia permeates every aspect of your life – it forever alters the trajectory of your story. For this year’s Fibromyalgia Awareness Day, I wanted to reflect how my diagnosis changed my path, both in negative and positive ways.
I have written about my story before, but here I want to talk about the impact my diagnosis had. Initially, all I could see afterwards was loss in every direction, as if a tornado had ripped through my life, reducing everything I had dreamt, all my castles-in-the-air, to rubble. There would be no graduation from my PhD, no career in international development, no travelling around the world, no more outdoor adventures, no parties, no financial independence, and no buying a house, among many other no’s.
Fibromyalgia changed most of my relationships. I now depend on my husband for many daily tasks, household chores, and finances – I am a dependent and he is my caregiver. I have lost friendships, and I see the friends I still have less frequently then I would like.
Grieving over the losses caused by chronic illness is a different process than the usual stages of grief people experience. When I wrote a post on grief after diagnosis, I found the concept of infinite losses very helpful for illuminating this:
Most often, grief is a reaction to a single, time-limited event… Grief associated with chronic illness, however, is more complex for many individuals. For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses (Jackson, 2014).
But my story doesn’t end there. In the trials I’ve experienced on my illness journey, I have forged a stronger, wiser and more patient personality. Fibromyalgia stripped me down to my most basic self and forced me to find my identity independent of career, relationships and external activities.
The positive gains that I’ve experienced after diagnosis cannot be measured in dollars, or posted as pretty pictures on social media. Instead of outward experiences, chronic illness has directed my journey inward. For the first time, I have cultivated a relationship with myself.
Mindfulness meditation was the turning point for me. As I came to know the content of my own heart and mind, and began to tend to my inner self like a gardener cultivating a flower bed, I learned that growing in wisdom was a worthwhile goal to pursue. People on the outside may not appreciate my efforts, and I might not have material worth to show for it, but my inner peace is a higher reward than any external validation.
Taking in the simple pleasures of an ordinary day has enriched my life – tuning into sensory experiences like the warmth of sunshine on your skin, the aroma of coffee brewing in the morning, or the sound of bird song. Learning to savour the little moments of closeness with people I love on a daily basis is one of the most important lessons I’ve learned.
Difficult moments happen daily, triggered by pain, difficult emotions, and frustrating appointments, among other things. I’ve come to see these like thunderstorms, that eventually pass, just like the weather. It helps me to read less into those thoughts and feelings, to stop over-analyzing or ruminating on them, and eventually to let them go.
Beginning to accept myself, despite my mistakes and missteps, and feel compassion for my body, even when it lets me down, has probably made me a stronger, more patient and compassionate person. I know I treat those around me better because of it.
Being a better person is kind of the point of living your life, after all. I’m not trying to say that developing fibromyalgia was worth it, because I don’t buy into that “think positive” prescription. But what I aim for is a quote I read somewhere along the way:
“it might not be the life you planned, but it’s a good life nonetheless”.