The Words I Never Expected From the Doctor Treating My Chronic Pain

Words are amazing. A single word can have several meanings, several pronunciations, and several different spellings. Words also have the uncanny ability to change a life forever. Some lives are changed for the better with words such as “I love you,” “I do,” “I’m pregnant,” “I got the job,” and “I’m proud of you.” And some are changed more negatively with words like I heard last week, “You will never be pain-free. Our goal is to keep your pain at a manageable level.”

At 42 years old, I never thought I would be sitting in a pain management office hurting, unemployed, waiting for my disability appeal to be processed, and hearing these words come out of the doctor’s mouth. I was numb. I nodded in agreement and listened as he talked about changing medication strengths and scheduling yet another injection to ease my current hot spot. I smiled and thanked him, walked up to the checkout desk, smiled and chatted with the woman scheduling my next round of appointments, told her to have a great rest of her day, and walked out to my car sitting in a full parking lot. I climbed into my vehicle, wincing from the pain shooting through my back and hip, and shut the door.

As the door shut, my old reality was left outside in that packed parking lot. Tears began streaming down my cheeks as I digested what had just taken place. A routine visit for me had turned into a devastating moment that I won’t forget. I felt my hope leaving my body with every tear that flowed out. I sat there in my car, sobbing and trying to come to grips with what I now knew. I ran through all the words of comfort that were sure to come. “It could be worse,” “He can’t know that for sure,” “It will be OK.”  The words meant to make me feel better usually only make it worse. Words that make me feel guilty for feeling sad about my situation, words that devalue the very intense emotions I am feeling that I am entirely justified to feel. I sat there for probably 20 minutes with all the words swirling around in my mind as I repeatedly attempted to pull myself together so I could drive home.

To other people, the words that I had just heard from my doctor probably don’t seem that serious. Sure, it’s not something anyone wants to hear but it’s not like I was just told that I have a terminal illness or that I would have to fight for my life, so it can’t be that bad, right? But I knew. I was fully aware of the meaning behind the words I struggled to digest. I was a hospice nurse for quite a while and my sole focus with my patients was to keep them as comfortable as possible while maintaining as much quality of life as possible. I learned that quality is so much more important than quantity. I had witnessed the impact of pain and I knew the struggle of controlling pain as patients developed a tolerance to their pain medicine and you start to run out of options to treat their pain as you approach higher and higher doses. So I have very real fears of how well I will be able to control my pain in the future because of how young I am and how long I have already been on medication.

Future — that is a word that terrifies me. It used to be a word I related to dreams and plans for things I want to do and accomplish. Now it is a vast gray horizon of uncertainty and days filled with doctor visits and procedures. Looking ahead and realizing that this is how the rest of my life will be is both overwhelming and devastating. To know that pain is now a constant in my life feels incredibly depressing and crushing. How do you look forward to anything when faced with that reality? It is a daily struggle right now to manage and control my pain. It is hard to make plans and I am constantly disappointing people when I have to cancel at the last minute. But I’m trying.

I don’t want to be a victim of my illness. I don’t want to be held hostage by the betrayal of my body. I have to find things in every day that I can accomplish or look forward to or I will completely lose hope. Most people don’t understand the power behind the words chronic pain. They don’t know the feeling of waking up every day not knowing how bad your pain will be that day or where your pain will be. They don’t know the feeling of relying on medications to get through your day, to wake up to a handful of pills, to go to bed after a handful of pills, to pack a small pharmacy with you if you go out somewhere, to have a weekly ritual of filling a medication planner, to take so many different medications that you never really know if you have a new symptom or if it is a side effect from one of them.

They haven’t experienced the pain of the epidural needle hitting a nerve and sending electric shocks down your leg and repeating every three months. They haven’t experienced the pain of the numbing injections to prepare you for joint injections. They haven’t felt the pounding, blinding pain of a migraine that hits you out of nowhere. They don’t know what it’s like to be in the bathroom crying because your bladder is having spasms and the pain is unrelenting and more intense than childbirth.

They don’t know the feeling of losing the ability to do simple tasks around the house and losing your independence, having to depend on others for basic household chores. They haven’t experienced the judgment when you break down and go to the hospital with your pain out of control and you tell them that you are a chronic pain patient.  They don’t see the judgmental glances exchanged and experience the way everyone’s attitude towards you changes when you say the words pain management. They don’t know the shame and guilt that can accompany the diagnosis of chronic pain.

Pain is such a small word. Four letters and only one definition in the dictionary but this little word has a different meaning to everyone. For some, it’s a rare fleeting moment when they stub their toe on the coffee table. For some, it’s positional pain that lasts a few weeks after surgery. For some, it’s a painful experience that lasts hours but leads to the greatest joy in their lives as they see their new baby. For some, it’s the small daily aches and pains that come with aging and arthritis that are eased by taking some Tylenol. For others, it is a daily battle with peaks and valleys and a constant state of uncertainty. Those four letters can control and diminish a life. And I am the only one that can take this word and decide how I let it affect me and my future. My fight will continue, I will find new ways to deal with the ever-changing enemy, and I will cling to a different four-letter word — hope.