“At some point after diagnosis, in our cycle of grief we stop looking for a cure and begin to advocate being ‘as well as possible.’ It stops being about delaying life until we are cured but enjoying the moment.”
I often wonder how many of my readers or people in general are on a search to finding a cure to their personal chronic pain illness. During the years I was searching for a cure to my invisible illness the term: ‘chronic pain’ was not common by any means. My bike accident happened a little over twenty years ago and I am now thirty four years old. I hate to sound ‘old’ but back then each professional I reached out to truly believed they had the cure to my pain: I believed each and every one of them and literally would do anything he or she asked of me. Not many people say: “Yes, please keep me awake as you cut nerve endings off the inside of my face. I am so excited. I will take any pain to get rid of this pain!” It was not any doctor’s fault in my mind when a procedure did not work because I could tell which doctors truly cared and believed with their expertise they could aid me in relief. Clearly, nothing worked and some of the things I had done only intensified my pain but that was then and this is now. Ten years is a very long time to search for a cure to any disease much less a disease professionals have a hard time understanding themselves. I put my body and mind and family through the ringer. It was not until my very early twenties that my head doctor/surgeon at the Mayo Clinic broke me the news that solidified my fate: “Jessica, you have chronic pain and I do not believe there is a cure to your specific disease. There are many ways to live with pain naturally and be happy but as of now there is no cure.” I felt like I was going to die in that moment. I remember just sitting there in a state where I knew no one in shock and total fear. It took a few minutes to digest the information I had just been given and then I just cried and cried: I did not think I could go on any longer. This was like a death. There was a nurse in the room with us and she held me and as she tried to calm me down the doctor explained that I could enter the Pain Rehab Center right there at the Mayo Clinic the very next day as he was able to get me in quickly. It was too much information to grasp and I wanted to run. I almost did and where I was about to run to was not a good place. As the doctor explained the three-week program at the Pain Rehab Center, I heard nothing but the words: “there is no cure, there is no cure, there is no cure.” Sometimes the grieving process takes a lifetime, sometimes years, and rarely a couple of days. This was the fastest, hardest grieving process I could ever explain. I went from shock, to denial, to anger, to depression, to fear, to accepting the idea of not finding a cure and I did go to the Pain Rehab Center and I will be forever grateful to the doctor who not only gave me a straight forward answer but also saved my life. Learning how to manage pain naturally and accepting that there may not be a cure in my lifetime gave me my life back.
Unless one has chronic pain one cannot possibly understand the work and dedication it takes to manage this invisible illness. From the outside looking in I look like a happy, healthy mother who has a wonderful life and all of that is true. But, I fight really hard each and every day of my life and there are moments I cry and people do not understand why: how could another understand a pain they have never had to endure. Then there are times I am so enthusiastic about the silliest things and people are confused by my intense joy. What people without chronic pain do not realize is I never had these beautiful moments before where I could just be happy and filled with light. I never thought I would survive this illness much less live with it and do the work it takes to have the healthiest, happiest life I can despite pain. Do I believe there will be a cure to chronic pain in my lifetime? No. I accepted that many years ago and I am so very grateful to not ever have to spend my entire life searching for something that may not exist. This acceptance and working on managing pain naturally was the greatest gift I have ever given myself. It is very difficult at times but on a scale of one to ten of happiness I went from a 1 to a good 7/8/9 once I accepted chronic pain and stopped that unrelenting search for a cure.