“I can explain it to you but I can’t understand it for you.”
The topic of crying and chronic pain came up recently and the question was asked: “Do you remember the first time you cried about your invisible illness, chronic pain?” I racked my mind for days upon days trying to think of the first time I cried about pain and there are too many memories of overwhelming tears because of my invisible illness to even come close to remembering the first time I cried because of chronic pain. I do not remember if I cried after I fell off of my bike in my early teens, resulting in brain surgery and months of recovery from my accident. I am sure I did, I’m not superwoman but I have no recollection of being depressed or sad during the months I spent recovering from my fall. To be honest I only remember good things: family members and friends visiting me, expressing their love and gratitude that I was alive and would be okay; flowers, cards, balloons, and gifts of all sorts; overwhelming amounts of attention and an outpour of affection from those I love the most in the world; and a calm sense that I had come very close to death and made it through something most people can never even imagine happening. I remember fear but I have no recollection of sadness. Granted, I was hooked up to machines and given many drugs for pain so I am sure that had a lot to do with it but I honestly remember peace and gratitude above all else. My tears and heartache did not come until way after my accident when the invisible pain crept in like a robber in the middle of the night stealing much more than any personal belongings, this robber (also known as chronic pain) was stealing my life: something money cannot buy.
The first time I remember crying because of chronic pain was my junior year of high school. I was sitting in social studies and one of my peers asked me why I was rubbing my face. I had no idea I had been rubbing my face. I later learned that massaging my face and head as I did, and sometimes still do is called a pain behavior. A pain behavior is anything that brings attention to your pain. I honestly had been rubbing my face and head for so many years that I had zero clue when or where I was demonstrating this pain behavior. When one of my peers pointed it out in front of everyone in my class, I was mortified. I had no answer. I had never heard of the term chronic pain and had no idea why I was in pain. I went home from school that day and swore I would never massage my face again but one hour later I was cognizant of the fact that as I was trying with all my might to do my homework, I had one hand on my face. I ran up to my room in a fit of tears, scared as to what was happening to my body. It was at that moment I believed I was going crazy. That thought would last for the next ten years.
The second time I truly remember crying was in my freshman year of college. I was in denial that I had a serious illness despite the fact that it was not visible and was trying to do it all. I was trying to balance my first year away from home, a full schedule in school attempting to get straight A’s, and searching for a cure to the pain I was feeling. I was either found behind my computer, taking breaks to cry in my bunk bed because pain was taking me away from concentrating on my books or computer; in doctor’s offices getting various surgeries and or medications, or out with my friends trying to numb my pain by way of drinking. I never told people I was going to the doctors or having surgery. I thought my friends would think I was crazy. With each medication, treatment or surgery my pain only got worse. As my pain got worse, my depression and anger intensified until I could no longer take school, relationships, or doctors. I spent my days crying in bed wishing I had any other life than the one I had.
I ended up going to the Mayo Clinic in Minnesota where I spent three months seeing every doctor the facility had to offer. I had about four doctor appointments a day. I spent those months in a hotel room becoming more and more distraught as nothing worked. One day, my main doctor there called me and asked me to come in for a meeting with himself and his nurse. I could hear, by the sound of his voice that nothing good was going to come of this meeting. As I took a bus to the meeting, I felt as if I was walking down my own death row just waiting for my sentence of life to be over for good. The Neurologist explained to me that I had a condition called chronic pain that was most likely correlated to my bike accident that happened in my young teens. This was the very first time I had heard the term: chronic pain. What he said next took my breath away. He said: “Jessica, you have chronic pain and unfortunately there is no magic cure, medication, or surgery to take away your pain. However, there is a program here at the Mayo Clinic called the Pain Rehab Center that helps people with chronic pain learn how to manage pain naturally and teaches people how to live a fulfilling life despite pain.” I was in SHOCK. I remember screaming through copious amounts of tears: “NO, NO, NO! I will not accept pain. I would rather die than live in pain the rest of my life. I hate you. I hate pain. I hate my life. Why me?? I did not come here for this!!! I came here for help!!! Pain had destroyed ten years of my life and you want me to live with pain?! Hell no!” I stormed out of his office and when I looked back through my tears I saw that the nurse was crying as well. I went back to my hotel room and laid in bed for days. I did not cry. I was numb. I did not get out of bed for anything, not even food. I laid in the dark with no television, curtains drawn, willing myself to sleep but pain and anxiety had taken over my entire body. I was done. Days later I finally accepted a phone call from my dad who begged me to consider going into the Pain Rehabilitation Program. I would have done anything for my dad and I finally agreed to go. I will never forget the days I spent in that dreary hotel room laying in a bed millions of other people had laid in wishing my life away. That is pain.
If you have read my story you know that the Pain Rehabilitation Program saved my life. Yes, I still have chronic pain but I no longer allow it to control my happiness. There are certain times I am more aware of pain than others but I have been managing pain naturally for years and although I do not have the life I had planned exactly, I have a life I am proud of and grateful for. I think there will always be times I cry because of chronic pain but the tears do not last and I am very happy for the most part. No matter how hard I try and remember the first time I cried because of chronic pain is like asking me what happens after we pass, I have no idea. I spent over a decade in tears and am just very grateful that pain no longer has that power over my life.