By Jeannette –
On social media I often see fellow patients with chronic pain and illness, questioned and put in the position where they have to explain how they can have a bit of beauty, joy, smiles, and soul shine, while they are sick and in daily pain. Apparently, a smile must negate pain.
I recently read a comment to an artist with intractable, debilitating pain, “How can you create these beautiful pieces of art when you are in such pain? I just can’t.” After the comment, the pain patient went on to feel the need to explain and possibly educate this person on her disease, validate her pain, explain the reason behind her creativity and behavior and speak to the effects of seeking this measure of happiness in her life in spite of pain.
The question floored me. It saddened me that after sharing this beauty, she would be questioned. Yes, it was an opportunity to educate, but is it our duty to educate when we may be trying desperately to simply forget our pain for a moment and shine. Shouldn’t it be our choice when we speak to our pain, our journey, or our coping skills?
What this person with pain was doing is called using coping skills. It is also a form of distraction. She was finding purpose in spite of her pain by doing the thing she can do, when she was at her baseline pain. Sadly, when a chronic pain patient uses coping skills many times they will pay for that later with a flare and a recovery phase.
For example, I have intractable pain in my hip and spine, that is at a high pain baseline level, however, after years, my brain has become accustomed to that as “normal.” At that level I have an idea of certain things that won’t induce a flare to a higher level of pain. I do what I can, to cope and live a life of purpose, regardless of each condition that causes me baseline pain. However, there are times, special things or needed tasks come up and the Beast of Pain causes me to pay with a flare and recover from that fight.
People with chronic pain should not be judged as they reach the emotional state of accepting that they have chronic, daily pain, that was not of their choosing and then the choice to try to not only live but shine through the pain.
What baffles me, is society generally does not ask people with other conditions or those who are grieving, how or why they use their positive coping skills, continue to smile or live. Imagine asking the mother who lost a child, or the widowed spouse, how they can possibly smile again and create new love with a rainbow baby or remarriage. They will always bear the pain of their loss, however they are allowed to cope and to find the shine of life. The person fighting cancer, found sitting by the beach, would not be questioned, how can you do that, and asked to explain themselves; instead, they would be encouraged. It is understood they are ill and in pain. They are seen as heroes if they are smiling and their pain is validated by others.
I ask why, then, is it not the same for those with other types of chronic pain and chronic illness? We are asked to constantly validate our own pain, physical limitations, and how we are managing, then we are asked to explain our positive coping skills, our smile, joy and shine. A smile does not invalidate or negate our pain, it is there and we are trying to cope every day and sometimes just trying to cope leads to more pain.
Originally posted to Jeannette’s new blog, In Pain or Shine.