Chronic Pain BTS
Like many others my chronic pain story is filled with unanswered questions, things that should’ve happened but never did, and feeling alone in what I was experiencing. I could go all the way back to my first experience with what I now know is Endometriosis, or fast forward a bit to my diagnosis of chronic back pain and fibromyalgia. But the story I want to tell are about the seemingly normal days, the routines and challenges that those without chronic pain or illness don’t see.
Chronic pain and illness is not a one size fits all experience but there are things that overlap, cycles we recognize as our own. These are a few of the Behind The Scenes (BTS) of chronic pain that people without might not know about:
The Isolation. Canceled plans, feeling stuck at home, loved ones who either invalidate you or try their best to support you but just don’t get it. Feelings of loneliness are so common in people with chronic pain and illness.
The Grief. Oh boy the grief. It’s the loss of the life we thought or hoped we were going to live and going through all the stages of grief. Denial. Anger. Bargaining. Depression. Acceptance. Jumping between those stages is like emotional whip lash.
Giving up the things we loved. There are things I used to be able to do that my body just won’t allow me to anymore, or at least not in the same way. Kickboxing, painting, crafting, concerts and music festivals, playing video games; these are just a few of the things I loved doing that I’ve had to mostly give up. It can be doubly challenging looking for replacements for past hobbies.
Feeling "lazy”. In a world where productivity is praised, individuals with chronic pain can feel lazy or struggle with worth. Our baseline is different from others and so the things we recognize as wins or productive are different. Some days getting up and getting ready are our accomplishment of the day. And that is ok!
Changes in our lifestyle. With the hopes of stopping a flare up or decrease intensity of symptoms we sometimes change diets, routines, and more. One of the things I miss most is caffeine. But the risk of the pain that can follow is no longer worth it.
Explaining our illness to others is like trying to give a summary of the cliffnotes version of what I experience. Sometimes it feels like we both walk away feeling confused.
If you live with chronic pain or illness maybe you can relate. Know that you are not alone and the others that experience this stand behind you.
If you don’t struggle with chronic pain or illness maybe this gives you new insights into what we experience. There are things you can do for loved ones with chronic pain and understanding even a little of their journey is a good start.
