One thing that continuously surprises me about fibromyalgia is self-doubt. We’ve all heard about fibromyalgia patients dealing with medical professionals who don’t believe their pain is real or who face disbelief from their friends and family around the validity of their diagnosis. But I didn’t expect to have to continually battle doubt within my own mind.
I think perhaps it has to do with the tenuous nature of the diagnosis. There isn’t a blood test or an x-ray we can point to as proof of our illness. Instead, we’re asked subjective questions that are really hard to answer.
“On a scale of one to 10, how tired are you?”
How do you define tired? Tired compared to whom?
“On a scale of one to 10, how much does it hurt?”
What is pain? Is it tenderness, a dull ache or a sharp pain? How much does it need to hurt to be considered pain? Do you mean according to my definition of pain now, or my definition of what pain was five years ago?
“When I press these spots, do they hurt?”
They’re sore but not excruciating. If you’d asked me three years ago, I would have said it hurt, but now it just feels tender. So, is that tender or painful? On a scale of one to 10, is that a five or an eight?
I remember leaving my rheumatologist’s office after just such an appointment with a diagnosis of fibromyalgia. In the following days and weeks I was overcome with doubt. Did I answer the questions correctly? If I’d answered differently, would I still have the same diagnosis? What if I’d exaggerated unintentionally?
Underlying the self-doubt, I’m sure, was a kernel of hope that my problem was fixable, that a few trips to a physical therapist could sort it out.
But self-doubt makes it really difficult to accept a diagnosis and that in turn makes it easy to push too hard and end up in a push/crash cycle.
It took me over a year to accept my diagnosis and I still find the doubts creeping in. Am I really sick or am I just being lazy? Am I really unable to make dinner tonight, or do I just not feel like it? That person with fibromyalgia is doing more than I am, so perhaps I’m just being overdramatic and could be doing a lot more. Maybe if I just exercise more, or take that particular supplement or change my diet…
The self-doubt makes an already overwhelming experience even more devastating because, not being able to trust even your own instincts, you feel particularly lost.
I really didn’t understand how much pain I was in until I experienced a particularly odd migraine. It was one of those marathon migraines and, unusually, it ended with an aura. While I had the aura, I had absolutely no pain. It lasted for a few, blissful hours and it was such a revelation to me – that this is what a normal person feels like. For just a little while, the sand bags fell off my limbs and the pain, tightness and stiffness lifted. I felt grateful for that brief respite, mostly because it made me realize the full truth of my situation. I have fibromyalgia. I have chronic pain and fatigue.
I’m finding the path of acceptance is one we all have to travel and discover on our own – naming our illness, recognizing our limitations, defining our needs and then figuring out the balance between a healthy (for us) level of activity and the rest we need. It’s not an easy journey and no one can give us a map to lead us through. Fortunately, through forums like this, we can support each other on our travels..