Throughout my thirty two years on this earth I have had felt alone more times than I can count but rarely was I ever alone. I was never one of the most “popular” girls in high school and definitely not in middle school! My bike accident happened while I was in middle school and unfortunately not many pre-teens wanted to associate with the new girl in town who was not only new but had half a shaved head and looked well: like she had brain surgery a few months before. I did have very faithful friends though (2 of which are to this day my best friends.) My hair grew back and I started to look “normal.” I had a lot of friends and did my best to fit in not always making the greatest choices but after eating lunch in the bathroom my entire year of seventh grade, I was willing to dress and act the “cool” way. Point being, I had friends and my chronic pain did not start to get unbearable until my senior year of high school. My close friends knew something was wrong with me but after a while people get kind of annoyed: “Jessica has a head ache again! Like really, what the hell is wrong with her?” After a while I just stopped talking about it because as much as I hurt physically I did not want to be alone. I’m not sure if I felt more alone at night under the covers thinking about pain or during the day surrounded by friends who had no idea what was really wrong with me. They were sick of hearing about pain and I was sick of talking about it.
I went on to college and same story followed me there. During these years my chronic pain was at its worst and it was around this time I started seeing doctor after doctor after doctor. I went to a college an hour from home so it was easy to leave for doctor’s appointments where I grew up. In the beginning of my search for a cure to my chronic pain, the only place I did feel alone was in a doctor’s office. At least I had someone to talk to and a lot of the specialists I saw truly seemed to care they just did not know how to help. During the years I was searching for help with my chronic pain I was always with people but was probably the loneliest I had ever been. I could not get through to anyone. No one understood me and I am sure many people thought the chronic pain was “all in my head.” My dad was the one person who I could talk to but I know he was at times just as frustrated as I was. He didn’t want to see his only daughter in constant pain and depressed and he was the one taking me to every appointment. Although I did have some people who truly loved me and knew I was struggling, I felt completely alone all the time.
It was not until I went to the Mayo Clinic Pain Rehab Center and was surrounded by other people who had chronic pain that I felt my loneliness go away. These people were complete strangers from states all over the country and yet I felt a bigger bond with them then I had had with anyone in years. To be understood is the strongest bond you can have with another human being. In groups we rarely talked about pain but we did not need to. We all had chronic pain and we all felt a closeness we knew we would struggle to find with anyone else.
I am rarely alone now (never if you count my little toddler) but I still feel lonely at times. When I am having a difficult chronic pain day I could be with ten of my favorite relatives and still feel totally alone. Chronic pain is an invisible illness and I think one of the most difficult aspects of chronic pain is the loneliness felt. The closest people in my life sometimes think I am in just a really bad mood and being a brat when really I just do not know how to communicate how I am feeling. It is humanly impossible for one to understand chronic pain unless you yourself have it. I have said this before but the three most powerful words you can say to someone with chronic pain is “I believe you.”
I’m happy that there seem to be more support groups etc online now for people with chronic pain but I get how lonely you feel sometimes. And I, Jessica may not know many people who read my blog but know that if you have chronic pain: “I believe you!”