For many years after my diagnosis, I didn't speak of my v pain to anyone other than a few close friends and my sweetheart. But when I started teaching yoga a few years ago, I wanted to be honest about what drew me to the practice. In the yoga world people often chit-chat about what brought them to the mat, and while I didn't want to be detailed in my honesty, I didn't want to lie, either.
At first I would say that I came to yoga because of a variety of chronic illnesses, but apparently that was too vague as people would always press for more. If I mentioned the pain disorder, the person conversing with me would then say "Oh, fibromyalgia?" (always fibromyalgia) at which point I would reply that no, it wasn't. Pause. Unwilling to say "vulvar pain" or explain the term "vulvodynia," I would simply say "I have a pelvic pain disorder."
At the mention of the word "pelvic" men would get uncomfortable and quickly remove themselves from the conversation, and sometimes that would happen with women too. But often - if it was a woman - she would lower her voice and say:
"I know someone who had that."
Had WHAT? Do you recall that the pelvis includes many different organs and body parts, any of which could experience pain? Some would leave the conversation at that, but often she'd talk about how horrible it had been for this person she knew. I'd try to look sympathetic and nod, having no idea if we were talking about endometriosis, interstitial cystitis, lichen sclerosis, vulvodynia, or something I'd never heard of.
I can't pin this peculiarity to the yoga world either, as over the years these conversations took place in other contexts as well.
In all of these these situations I clearly had boundaries about how detailed I was willing to be about my health history, so I have never thought it fair to call anyone out and actually ask them what they meant. But it never ceases to amaze me how many women out there will go on about something - furtively - when it is not clear if both people are discussing the same thing.
Like last week's post, these veiled conversations have highlighted the fact that we won't make any progress without first learning how to communicate about the pelvis.
The other odd thing is that the phrase is always the same - I know someone who had that. Let's break it apart, shall we?
1.) Part One: "I know someone..." No one has ever admitted me to me right then and there that they themselves struggle with chronic pelvic pain. The closest I've gotten to that is a woman who said she would like to meet with me to talk more about this topic - we did meet, and in that safe space she did say that she had been having some struggles and asked me about my experience.
I'm not sure if women are simply more willing to discuss something sensitive with the safety of distance, while women struggling with these health issues themselves remain silent. Or perhaps "I know someone" sometimes means "I know someone - me?" I think usually the situation is the former, but I have sometimes wondered.
2.) Part Two: "...who had..." For some reason, this person my conversation partner knows is apparently beyond her pelvic pain - it's in the past. Again, is it because sensitive topics are easier to discuss with distance, not only in terms of who it is happening to, but at what point in time?
Statistically, it seems very unlikely to me that ONLY women who know women who had "that" in the past should ever meet me, and never the women suffering themselves, or the friends of women suffering currently.
Or is that some of these sufferers are still struggling, but its just easier for the friend to communicate about if she pretends its in the past? Maybe my conversation partners don't want to stigmatize their friends, even anonymously, by advertising her "broken" lady parts? Or is that the friend heard about it in the past and is assuming the sufferer has recovered, when in fact perhaps the sufferer has just not talked about it for a while? Given how persistent many pelvic pain disorders are, and the lack of good treatment options for many of them, I find it hard to believe that 100% of the cases women tell me about are neatly and tidily taken care of and in the past permanently.
3.) Part Three: "...that." Ah yes, "that." Which again means what??? When it comes to pelvic pain, intelligent and otherwise articulate women are reduced to communicating via pronouns without bothering to specify what that pronoun is referring to.
No one has ever said to me "I know someone who is struggling with a pelvic pain disorder as well." No, no, this person always had "that" as if "pelvic" as an adjective only described one body part, as opposed to a region of the body with many different parts and functions contained within it.
* * *
These conversations have been very educational, in that I have learned women do not have the tools to talk articulately about issues of the pelvis.
Also frustrating, in that they don't really come to anything. The woman I am speaking with generally tells me quickly how horrible it was for her friend, warmly wishes me good luck, and then runs for the door.
As I write this, I think I need to re-think my policy of responding with sympathetic nods. How can I shift the conversation while still keeping my conversation partner feeling safe enough to continue the discussion?
"Oh, I'm sorry to hear that someone you know is suffering - we may not have the same issue, however, as there are dozens of pelvic pain disorders affecting all of the different systems in the pelvis. I'm always looking for resources for my own health as well as to refer to others, so I would love to get your contact information - would you be comfortable asking your friend if she would be willing to talk to me and exchange resources?"
"You know, it's funny, I get that response a lot even though there are dozens of different pelvic pain disorders. Many women suffer from one or more of them, so I am always looking for more resources for myself and others - do you think your friend would be willing to talk with me? Maybe she and I can help each other out."
The next time this situation arises I will try and remember to use one of these responses instead. It would be great to be able to build on these points of contact - get a referral, meet someone new, whatever. Maybe by providing a woman with an experience of an articulate but still discreet and respectful conversation, she will have an easier time talking about pelvic pain in the future.
I'll let you know how it goes. In the meanwhile, does this happen to anyone else?