I had the pleasure this past Friday of giving a Skype presentation to a group of five rising sophomores studying vulvodynia and immunology as part of a summer research project. I met their professor a few weeks ago at my college reunion, and she asked me to talk to them so they could have a better understanding of what v pain patients go through.
I sketched out my journey for them, and then led a discussion on how societal values shape scientific research - i.e, helping them understand WHY it was so hard for me to find care. Within the lab scientists work hard to eliminate bias, but what question they are researching is subject to the blindspots and prejudices of the society in which that scientist operates.
I hope that they took away an understanding not only of the importance of the research they are doing and ideas for how they can support and create change outside the lab, but also a greater sense of the context in which they practice science. It was fun to hear their comments and questions, to see the gears whirring as they took it all in.
I have to say it was SO AWESOME. If you told me ten years ago that I would one day talk about my v pain in public to strangers, I would have been have been mortified. But - with a mere eleven years of processing my shame and baggage around the topic under my belt - it was great. V pain is connected to so many topics I already love talking about: the role of women in society, sex, feminism, social change, justice, class, race, power structures, history, relationships, emotions, spirituality, personal growth...the list goes on. I am by nature a very holistic, big picture thinker, someone who loves to see how everything is connected, and v pain lends itself to that ability very nicely.
This was the first time I have ever (1.) done a presentation on v pain and (2.) told complete strangers about my experience of v pain in a conversation rather than via writing (totally different not hiding behind the keyboard!) and (3.) given a presentation of any kind in an college setting, as a non-student.
It was a big step for me. This Skype presentation helped me see how much progress I've made in learning how to communicate about v pain, and it was so validating to see that others could benefit from my knowledge. Sure, I stumbled and was less than articulate at times, but isn't there a saying about "Speak the truth, even if your voice shakes?"
So the moral of the story is:
Even if you are deeply troubled by your v pain and have a tough time talking about it today, that doesn't mean that you won't someday shake off those shame-shackles and be completely capable of telling your story from a place of power and pride.
You are amazing, wherever you are on your journey. Remember that!
* * * PS * * *
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