Public vs Private

There is a post I've been wanting to write. I've been mulling it over, rolling it through my hands like a piece of clay, trying to see what shape it could take.

But I probably won't write it, and if I do, I won't publish it. Not now, anyway.

Why? Because at the end of the day, this website is open to anyone. There is a benefit to that - it shines light on a woefully ignored and often shame-filled topic - but drawbacks too. As much as I have been willing to share here, there is more that I have been holding back.

And I suspect you have been too.

In my experience and opinion it is important for people sharing an experience to draw boundaries and have a dedicated, safe, and private space to hash out their issues. 

This space is not that. Although I know only a few readers personally, among those few are friends who don't suffer from pelvic pain - they want to support my project or are curious about my writing. That's all well and good, but it doesn't allow for the process a closed space provides.

I've been thinking about how to remedy this. I don't want to stop having a public blog - it plays an important role - but I think this website can provide a lot more.

What features will it have? How will I build it? How do I ensure that it's members are all and only women with chronic pelvic pain disorders?

(Significant others, loved ones, you will have to wait - I realize that you may like a dedicated space too, but this one is not for you.)

I have ideas and proposals, but not answers to these questions. If you have ideas or suggestions I'd love to hear them. You can contact me here.

Thank you!

What does a lifestyle blog have to do with chronic illness?

"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.

“6 Crazy Things People Used to Believe About Vaginas" - from HuffPost

Whenever I get frustrated about the lack of knowledge in our society regarding female anatomy, or the poor care that is so prevalent regarding women's health, I need to be reminded of stuff like this. Seriously? Educating women would harm her reproductive organs? Vaginas have TEETH? Women can't get pregnant via rape? Are you kidding me?

The insanity of this misinformation could only come out of a very sick society.

This underscores for me the importance of supporting women's rights and women's health across the board, nationally and internationally.

Many facets of women's lives have improved dramatically in only a few generations, at least in Europe and the United States - enough so that feminism is sometimes seen as passé, a battle that was fought and won in the 70's - but don't let them fool ya. We still have so much farther to go.

Despite the fact that most women and mothers are in the paid workforce today, they still do more household chores and childcare than men and fathers. The US still hasn't had a female president. In the US women only earn 66% of what men are paid for the same job... The list of inequalities goes on, and touches every aspect of our lives.

Is it any wonder that we receive poor health care?

The lack of research and knowledge about women's health is part of a much broader problem of deeply ingrained sexism and misogyny (and rascism, homophobia, rising income inequality, class divisions, the rich world's poor treatment of refugees and immigrants...) across the world.

All of humankind has a lot of work to do to make our world a place where all people are valued.

Hopefully women and men will continue to work for gender parity, and the gains we make professionally, politically, and personally will influence the world of medicine as well.

Until then...? Well, I'm feeling a lot like the angry face at the top of this post.

How to Survive the Holidays: Guest Post on ChronicBabe

When the weekly ChronicBabe email landed in my inbox this morning I knew I had to share it with you. It is chock full of how to manage the holidays with chronic illness! Bookmark it for next year too.

How to Survive the Holidays

Blerg

Hey all,

Due to a number of unforeseen circumstances not related to pelvic pain, I arrive at this Monday exhausted and emotionally drained. Such is life, sometimes.

So as to not tire myself further, I am cutting back on my list of things to do today, including writing. I hope the brevity of this post will serve as a reminder that we all need a break sometimes, and that it's okay to take one - you're not alone.

Be good to yourself!