Ever since I was a small child, I was extremely social and loved being around people. I was the class clown in elementary school and always filled with enthusiasm at the smallest things. Pre bike accident and chronic pain, I hated being alone and wanted to be a part of everything possible. At the age of thirteen I learned that life can change at the snap of a finger or in my case a fall off of my bicycle. Following my brain surgery and long recovery in the hospital I was still that girl who wanted to be around people. Yes, half of my head had been shaved, I had visible scars on my head and along my body but I was understood. People flooded into the ICU and later my hospital room with balloons, flowers, and love. Fast forward a couple months once I was “better” and the flowers, balloons, and understanding had disappeared as quickly as I fell off that bike. Fast forward a couple years and I no longer wanted to be around anyone. All visible scars had vanished and I looked like a very healthy young girl but the invisible scars hurt more than each staple removed from my scalp and each tube removed from my body. People had understood a bike accident. I mean brain surgery is not something you hear about happening to most people. Nobody understood chronic pain and the less people understood me, the more I wanted to be alone.
Over time chronic pain led me down a path of total isolation. Even when I was around friends and family I felt totally alone. I think it is lonelier to be around people when you are suffering and not recognized than it is to be physically alone. The only people I really talked to were doctors and people who claimed to have a magic cure to my invisible illness. I had friends and two of them remain my closest friends but I really only felt like I was “the old fun Jessica pre cp” when we were out having drinks and being crazy teenagers and young adults. I did not want to be alone but I also hated being around people. I wanted to have the same problems that my friends had: silly fights with friends, not finding the right prom dress, worrying about grades, and having boy troubles. Each time anyone said they had a headache or a stomach ache I got so angry inside because I wanted to scream: “You cannot handle a headache, pain is my life and all that I think about. You are so lucky and do not even realize it!!!!” There are many reasons people with chronic pain isolate themselves. When someone with the flu or a migraine stays in bed all day because they feel awful it is “normal” but that is how chronic pain can be each day for those dealing with a never ending illness.
I am now older and no longer isolate myself and most of the time am that social, people person I had always been. It took so many years to get to this point and many road blocks and relapses but for the most part I am living the life I want and now actually cherish alone time as motherhood steals away most of my time (not complaining!!!) However, I still have times that I have a difficult day managing pain and it is very difficult to distract myself from how my body feels and I want to be alone. Some days can be depressing when it is beautiful outside and I feel trapped inside my pain. But, those days rarely come and when they do I know the next day I will turn it all around. I do not get stuck in isolation any longer and am happy with my lifestyle despite that some people see me as a thirty three year old who is boring and in bed before nine pm. I need to put my management of chronic pain before anything else or I will end up right where I was when chronic pain ruled my world. I know one person who is feeling very isolated with her pain and feels totally alone and I am positive many people reading this are right there with her. Stop over thinking where you are in your journey with chronic pain and just let the journey unfold. You are not alone but do not expect anyone close to you to understand what you are feeling: it is just not possible. You will find balance in your life with chronic pain and you just have to take one day at a time. It is so difficult for me to write: do not isolate yourself, get out there and do something you enjoy, live the life you want despite the pain. I cannot write that to all of you because I have been where you are and if I saw that in writing back then it would have made me feel worse. All I want you to do is know that what you are feeling is totally normal and to let go of any expectations from people who do not have chronic pain. If I can get to a point of acceptance with chronic pain and manage it without medicine or doctors, anyone can. Maybe not today, or this year but you will get here. Overthinking will truly make everything worse. At any given point you have the power to say: This is not how my story is going to end. Trust the journey.
Below you can listen to Carly’s story another young lady that talks about Invisible disabilities.