When I first heard the term “Spoonie” I was a bit confused about what spoons had to do with chronic pain. Then I was introduced to The Spoon Theory (which blew my mind) and I was impressed and encouraged by how quickly it was embraced by the chronic pain/illness community. Suddenly we had this word, this label that helped us identify with each other. We had a way to explain our struggles that was universal, regardless of how individualized our stories were.
When I first saw the term Spoonie Warrior I will admit, I felt a little intimidated. I had only ever seen it attached to photos of Spoonies who did SoulCycle or hiked mountains on their off days. #SpoonieWarrior was always attached to photos on Instagram of others in the community running 5k’s and using all natural remedies to cope with their illness and pain. By this example I was, in no way, a Spoonie Warrior.
I tried, man did I try to mimic these photos I saw. I pushed myself back into a workout routine that caused pain flares to end all pain flares. I longed to be one of those awe inspiring Spoonies who were hurting and could still do it all. Then, one day I came across a meme that simply had the definition of the word “warrior” on it.
A person who shows or has shown great vigor, courage or aggressiveness.
Haven’t I been just that? Have I not been aggressive in my fight to control, even end, my pain? Have I not gone to bat for myself as well as others in my position so that we might be heard? Am I not courageous every time I get on that operating table? What does it mean exactly to be a warrior?
I read an article once by a woman who had been living with RA for 20 years and she talked about the things she had learned in that time. One thing she said really stuck with me. She said that we should utilize all of the tools available to us (handicap signs, medications, therapies, etc.) because someone had to go before us to earn those things.
This is so spot on in my mind. Pelvic Congestion Syndrome is so new to the medical world that sometimes I feel like no one has a clue what they are doing. When I was first diagnosed my surgeon said he didn’t believe it was even real until he saw it in my body. (Surprise!!!) When I saw the Radiologist he was confident that a quick procedure would fix me up. It didn’t. Five years later and there are hundreds of us coming together realizing that nothing is working, that it’s not just an annoying pain in the pelvis and at least 20 other symptoms come along with this diagnosis.
We are the beginning of this condition. We are the warriors on the battlefield right now and it is our job to explore every option, every treatment, and every medication until we find the plan that works. There will be people who come behind us needing help in understanding what a Pelvic Congestion Syndrome diagnosis means, how it can affect their life, what treatments work best and how to best cope with the life you have after.
We can’t just sit on our couches with our meds and waste away our time wallowing in the fact that this sucks. (Now, don’t get me wrong, this does suck and some days my couch and superhero blanket is where I need to be.) We are fighting against so many things right now. We are fighting against the stigma of invisible illnesses, of being “too young to be sick”, we are pushing back against the providers who believe we only want narcotics, against friends and family who think we are lazy, and against the medical community who doesn’t think it can be this awful.
We go through procedure after procedure, medication trial after medication trial, needle pricks, blood draws, CT Scans, MRI’s and ultrasounds all without batting an eye. We get up on that exam table and get poked and prodded while answering the same questions over and over again all with the hope that maybe this time it will be different.
When the appointment is over we leave the clinic and head back to our homes. We cook dinner for our families, fold laundry and sign field trip forms. We put our war paint on and head out to weddings and birthday parties determined to enjoy ourselves for just a little while. Then we wake up the next morning and do it all again.
We aren’t just Spoonies, we are Spoonie Warriors.