So Close to Help, Yet So Far Away
The Exhausting Fight for Accessible Pain Management
“LOOK AT ME! I AM BURNT UP. I HAVE NO FEELING IN CERTAIN PARTS OF MY ABDOMEN. I AM SUFFERING AND DROWNING!”
Those were the words I spoke to a nurse practitioner as I lifted my dress and lowered my underwear to show her what decades of endometriosis and medical interventions had done to my body.
I was desperate to be heard.
I walked into that pain management clinic nervous but hopeful. After years of medications, procedures, and surgeries, I was finally preparing to begin treatment focused on helping me live more comfortably with chronic pain.
Instead, I left $100 poorer, furious, and still without pain relief.
Years ago, I underwent a spinal cord stimulator trial in hopes of finding relief from chronic pain. I was awake during the procedure, but the stimulation never reached beyond my feet. The trial was unsuccessful.
This photograph represents just one of the many treatments I've endured in my decades-long fight to manage endometriosis-related pain.
I Followed the Instructions. He Changed Them.
I've lived with chronic insomnia since I was 15. Sleep medication isn't some casual convenience in my life. It's how I sleep.
During my first appointment, the pain management physician instructed me to change the type of sleep medication I was taking. I did exactly what he told me, despite how difficult the process was.
Then I returned, ready to begin treatment, and suddenly I couldn't take ANY sleep medication.
Sir, WHAT?
He never acknowledged what he'd previously told me. Instead, someone handed me a generic policy sheet explaining the clinic's restrictions on benzodiazepines and sleep aids.
Where was this information during my first appointment?
When I expressed my frustration, the nurse practitioner suggested another clinic with less restrictive policies.
Absolutely not.
I wasn't challenging the rules. I was challenging the misinformation that had cost me time, money, and access to care.
The Price of Playing Nice
Let me tell you something about the younger me.
That physician would have become my number one adversary. I would have made it my business to tell anyone who would listen how inconsiderate and insensitive I found his behavior. I've challenged doctors before, and I was never afraid to make noise.
But I'm 51 now.
And I am tired.
Not the kind of tired that a good night's sleep fixes. I'm exhausted by a fight that has never-ending rounds.
I was seething in that examination room, yet strangely calm. I wanted to unleash every ounce of frustration I felt. But I needed this man's help.
So I swallowed my anger and played nice.
Imagine being so dependent on a healthcare system that you feel you cannot fully express your frustration for fear of jeopardizing the very care you desperately need.
I'm Not Asking for a Miracle
I am not asking to be pain-free. I know my reality.
I want to stay out of the hospital. I want medication that helps me function, not medication that leaves me unable to participate in my own life.
Even the physician described our goal as keeping me “comfortable with functional pain.”
Instead, I'm waiting until November 4 because I cannot afford another expensive appointment sooner.
My psychiatrist is preparing a letter, and moving forward, I will document every appointment in writing.
Because apparently, I still have to enter medical appointments prepared for battle.
Who Fights for Me?
I've never had anyone to advocate for me. I've always been the one standing in my own corner.
Sometimes, I want someone to recognize that I am drowning and step in without requiring me to prove, explain, or defend my suffering one more time.
Sometimes, I want to be allowed to be soft.
But endometriosis has rarely afforded me that luxury.
Healthcare accessibility isn't simply about getting an appointment. It's about what happens after you get there.
I am so close to help, yet still so far away.
And at 51, what frightens me isn't that another round of this fight has begun.
It's how little fight I have left.
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