My Fibromyalgia Story
I have been in pain for a very long time, so long that I don’t remember when I wasn’t in pain.
My timeline has big key moments like when a workplace injury to my spine kept me from work
for weeks and became chronic over a year or when I was so sick my doctor actually asked how I
had been walking around. But the little pains have defined my life as much as the larger ones.
I was diagnosed with fibromyalgia roughly two years ago, a pain condition characterized by
widespread unexplainable pain and two hundred other symptoms. The short of it is that I am
always in pain, everyday without exception. My pain is never below a 3 and most often around a
4-6 range with outliers during flare ups of my symptoms. If you are ever talking to me, I am in
pain to some extent no matter how well I look or what I say. A good day just means it’s
manageable and doesn’t get in my way too much.
When I was first diagnosed I felt hollowed out looking at my life and all the things I’d worked so
hard for only to find out that those things may not be possible anymore. I wanted three kids but
what if I can’t play with them or lift them. Some days I can barely take care of me. At the time I
wanted to be a professor but what if I can’t stand to lecture or what if my brain fog doesn’t let
me think or string two sentences together.
I was two years into therapy and the diagnosis was everywhere. There is no cure for
fibromyalgia because they don’t understand what causes it, there are only theories. At the time I
wondered if all the time I spent hating myself and my body when I was younger and mentally ill
had finally manifested. That I had done it to myself through my own thoughts and condemned
myself to a life of never forgetting what I took for granted. It felt like the final proof from the
universe that I really wasn’t built to be happy or to have nice things.
In Nova Scotia there are very limited options that support the unique intersection of chronic pain
and mental health despite the roughly 185,000 Nova Scotians who experience chronic pain.
Support groups are largely non-existent and have struggled for funding for years. I am currently
on a wait list until 2025 for the pain clinic in Halifax. With the end of my Undergrad also comes
the end of my access to the doctors I have seen over the past five years. Like many other Nova
Scotians I am without a family doctor with only a prescription for the pain medication that has
kept my pain within its 4-6 range.
I am unsure where that leaves me.
I’m still coming back. That darkness still lurks especially when the pain is bad or when I’m told
I’m overreacting or too young to be sick. It is a lot of work to experience my disability as
something else but I am growing still.
I am learning to love the way my disability is teaching me to take care of myself and to listen to
my body. I am learning to love the way I have learned to advocate for myself whether it is with
doctors or family or friends. It is teaching me about rest and the importance of communication.
My body is trying so hard to protect me that it overdoes it and attacks pain that isn’t there, even
if I still feel it as real. I am not less for moving and existing differently in the world, I am
learning to take up space again.
My mental health and my physical health are deeply entwined, both manifesting in the sphere of
the other and exacerbating each other as much as they try to understand each other. The
uncertainty of my health triggers my anxious thoughts and my depressions hopelessness, and my
anxious thoughts stimulate my pain. They coexist in trying to navigate the world with me and
I’m learning when to let them give me directions and to never let them steer.