If there is any benefit to being a chronic pain blogger, it’s that a door is suddenly thrust open on an entire community you had no idea existed, or maybe were in a certain amount of denial about existing. Each blog post, each step forward into social media and chat boards dedicated to chronic pain/illness sheds light on each face and each voice out there who is struggling with the same thing and suddenly, you are not alone. At the same time you become painfully aware of how many others are suffering right alongside you and it can steal your breath away. I am trying to use my voice in the community to shed light on a community that is still alienated by the world.
We are outsiders, living on the fringes of the medical community because there is no easy fix for us. Many doctors don’t believe us; many doctors have thrown their hands up in the air and given up and some have their hands tied behind their back, unable to help us because the laws make it so difficult to prescribe meds they believe will help. So here I am, juxtaposition between being a part of the community and one of the voices of the community wanting to bring to light the many faces. Sometimes, in order to do that we need, we have to put ourselves out there and I try to do that on my blog and here but vulnerability is scary. It’s scary to everyone but I think a little bit more so among the chronic community because we are already vulnerable and the idea of making ourselves more so, is not ideal. But in an effort to make it real I want to share with you the very stark reality I find myself in the midst of. I’m sure some of these feelings others can relate to but these are mine.
• I am afraid. I live in this cycle of fear that grips me sometimes so tightly I can’t breathe. I fear for tomorrow, I fear for 20 years down the road and every moment in between. I don’t want to be a burden and despite all they say about marriage and taking care of one another through sickness and health, I wasn’t really planning on my husband to have to pick up a role as caretaker when I am 43 years old. I’m supposed to be the one taking care of everyone and I’m supposed to be the one caring for my parents and I feel awful I can’t help them more.
• I feel guilty. I feel it for things I don’t think you should feel guilty for, like being happy. I feel guilty for finding joy in my life and smiling because I worry that people won’t believe I am sick. You remember when you were little and maybe tried to get out of school by playing sick and mom caught you playing in your room and there went your dreams of lounging in the house all day? That is pretty much what goes on in my head. But what people don’t understand is that when you are in pain 24/7 that you become accustom to being in pain. So when I smile at something silly my cat did or a laugh at a funny show on television or just exhibit any normal sort of happiness I want to let people know my pain wasn’t miraculously healed. But I refuse to allow this to take that away from me.
• I’m still waiting for this adjustment period to end. It’s been almost four years since this all began and I am still…trying to adjust to it all. People have told me that I just have to accept this ‘new normal’ and press on, but I don’t understand, for the life of me what that means. I don’t understand how to define or quantify a new normal. I liked my old normal. I liked me and what I was able to do every day. This stranger I see in the mirror doesn’t fit with who I am in my head or my soul and it’s very difficult to be reminded minute by minute of your limitations. It also feels like something new pops up from month to month, so there is no plateau of symptoms that I can just get used to and work around.
• If fear and guilt were not enough how about a side dish of demoralization? I suppose it goes hand in hand with the fear and the guilt because the feeling of demoralization stems from everything that has been ripped away from you. Everything that once filled my life and made it joyful and exciting was systematically taken away until it felt as though I was standing on an empty playground. When you are reduced to staying in bed, or glued to a recliner like I am sometimes because even the bed gets uncomfortable, you begin to wonder why. What is my purpose, why do I exist, where do I fit that I can be useful? The demoralization of chronic pain is punishing.
I want to believe I have purpose. I want to believe that my illness is a door opened instead of a door closed. Instead of being demoralized I want to be empowered and I want to share that with you too.