“For people with chronic pain self care is not selfish or irresponsible: its survival.”
I have spent about two thirds of my life feeling somewhat selfish because of my invisible illness: chronic pain. During the time in which I was searching for a cure to my pain I was consumed by anger, depression, anxiety, loss, and pain so severe I could not even will myself to read a book which was something I had always loved. I was called selfish many times. I was the queen of cancelling plans at the last minute, missing classes because I was in too much physical pain and subsequent depression that I could not get out of bed, and missing important family events because I could not imagine being around the people who thought I was this amazing little girl who was now going to college and being the Jessica everyone thought I would be see the pain even my smile could not hide. I was embarrassed, ashamed, confused and in so much physical and emotional pain that I was “selfish.” However, I was NOT being selfish because I wanted to do what I wanted to do and let people down. I wanted to be with my friends, I wanted to be in class studying, and I wanted to be around the people I loved more than anything in the world. Instead I was balled up in bed, alone either crying until the tears could just no longer fall or staring at the wall. Some may call that selfish however I truly was just surviving and over the years I was hanging on by a thread. So not only did I feel guilty for an invisible illness I had yet to be diagnosed with as chronic pain but I felt hated because everyone thought I was just a selfish person who ditched the people she claimed she loved. Hell on Earth. There are no other words to describe those ten plus years of my life: pure and utter hell every second of every day of every year. I no longer look back and see myself as being selfish. I was surviving alone with a pain no one could see and a pain I could not fathom.
Fast forward to when I did find acceptance to my invisible illness: chronic pain and learned how to manage this disease naturally. The first amazing thing to enter my existence once I came to a place of acceptance was hope. Then the work began. I began managing pain naturally when I was twenty two and I am now thirty five and it is still a daily routine for me that I do in order to manage pain without pain managing me. I still have chronic pain. I still have difficult hours and sometimes difficult days but the good days far out weigh the bad. Is there a coincidence in my eyes that how I manage pain works as opposed to how I used to manage pain by searching for a cure, I truly do not believe so. Is my life perfect? Hell no. However, I am in a place that I never thought after my bike accident and subsequent pain I would be in. My dreams have come true and more dreams will come true. There is no exact destination for me and the journey does have its ups and downs but I am finally the Jessica I was meant to be. With that said I do find people calling me selfish at times. I would be lying if that term did not hurt but I am working on not allowing other people’s views on how I live or manage pain to interfere with my happiness. Like the saying goes: “Never mock a pain you have not endured.” I have to set some limitations in my life in order to control my pain naturally. I cannot do EVERYTHING a person without chronic pain can do. I will re-phrase that. I can do EVERYTHING a person without chronic pain can do but if I did so I would be right back in the first paragraph of this article: Hell on Earth. I have to take care of myself: body, mind and spirit and know and respect my limitations in order to take care of the people I love and be the person I was meant to be. I say no to invitations that people think is very selfish of me. Do I say no to all invites or requests to spend time with me: no. However, I do say no when I know that a certain day is already busy and going to one extra thing will truly intensify my pain I listen to my inner wisdom and say no. I have an odd sleeping schedule. I go to sleep early: between eight pm and nine pm on most nights. There are the occasional nights I stay awake later to spend time with the people I love but on average I fall asleep with a book in my hand around nine pm: yes on the weekends as well. I am a morning person and part of my management of chronic pain is a good amount of sleep, exercise, and meditation. I am a mother. I like to wake up before my four year old so that I can exercise and practice a small meditation without her angelic yet at times frustrating toddler voice saying: mommy, mommy, mommy fifty plus times. I have been called selfish for my sleep schedule. Those are just two small examples of why I am called selfish at this point and time in my life. If I could turn back time I would never have fallen off of my bike and I would never have had chronic pain. I cannot do so. I understand why people may see me as selfish at times but what they do not realize is that I still struggle with the fact that I do have chronic pain and although I am thrilled I am living a happy life despite chronic pain it still saddens me that I am unable to do everything I would be able to do had it not been for my invisible illness.
I beg all of you to not or try not and allow what others say to you regarding how you choose to live your life: and this goes for EVERYONE. I am damned if I do and damned if I do not so to speak. If I do not manage pain in a healthy manner I will be a miserable hot mess and people will call me selfish because I cannot really do anything and if I manage pain naturally I am called selfish because I have to set my own limitations. So what is the lesson in that? You have to do what you know intuitively is right for you. If you are not taking care of yourself as only you know how to do than you are useless to everyone, especially yourself. People will always talk and have an opinion. Tune that crap out. None of you are selfish people. I know factually you are all doing the best you can and if you had a choice you would not have chronic pain. You are not selfish people, you are survivors.