"If someone is sick, they should just go to the doctor - asking other people for help, that's ridiculous."
"I don't understand, what would you be offering that a website like the National Vulvodynia Association isn't already?"
While most folks I tell about this blog "get it," there have been a few people who don't. When I say that I write a lifestyle blog for women with chronic pelvic pain disorders, their faces turn quizzical. A lightbulb goes off for some people when I explain further, but others remain brusque and dismissive.
Just as they don't understand where I am coming from, I don't understand them any better. Perhaps they have never known anyone with a chronic illness? Perhaps they fail to see or willfully ignore how illness affects one's professional life, domestic life, relationships, friendships, decisions, life paths, religious or spiritual beliefs?
For me, this part of the illness experience is just as important to recognize and sort through as what is regarded as traditional "healthcare."
* * *
After a weekend that involved a double whammy of emotional hits, I am struck by the fact that they are completely disconnected except for the common thread of vulvodynia.
Chronic pain shows up everywhere in my life - sometimes in the foreground, sometimes in the background, its presence coloring the lens through which I view a particular event or situation.
Shifting interpretations of the past, decisions I make about the present, plans (when and if I have them) for the future - there it is, sometimes looming large, other times so small I can barely see it.
* * *
For me, its hard to make sense of chronic pain without considering its precursors. The body adjusts to what is asked of it - while its not anyone's fault, chronic illness doesn't come out of nowhere.
I see it as significant that my chronic pain was preceded by adolescent anorexia and clinical depression. I wonder how things would have turned out had the circumstances of my life not driven me to those extreme and self-destructive coping mechanisms. Had I the resources to navigate around those, would I still have developed vulvodynia?
There will never be an answer, but there was a period in my life where it was necessary and healthy to delve deeply into these issues, to own and express my anger and grief. Spending time with my history allowed me to see patterns, to see how I react to things, to learn better ways of caring for myself in the present.
Just as vulvodynia has shaped how I perceive and make sense of my past, it also affects my behavior in the present, and molds my expectations and beliefs about my future.
My past, my present, my future - all of them are influenced by my experiences, and a decade long journey with vulvodynia happens to be a very significant life experience.
* * *
Some people will never get it.
But for me, and many others dealing with chronic pain, there is no way to deny that illness influences so much of our lives.
Learning how to manage the "life" part of illness is just as important to improving one's health as "obtaining health" itself - in some cases, such as when a state of physical health is unattainable, even more so.