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I think one of the challenges when LS shows up in the genitals is how we decide whether we are going to talk about this with others and if we are what do we say and to whom? I am someone who has always been quite open about her sexuality and many aspects of my life and so those close to me know about this in some capacity however I don't talk to everyone about it.
I have told people in my life about this diagnosis for a number of reasons. One, initially I was very upset and needed to talk to someone because talking is how I process. Two, I wanted the women in my family to know about it as I think my mother had it and if there is a genetic connection, I don't want them to go through the misdiagnoses that I went through. Had I know this thing existed when I was in my twenties and my skin was splitting, well things would probably be very different now.
Thirdly, on a broader level, I believe that LS isn't well known not only because it is isn't common, but because of the discomfort we have regarding talking about our genitals. We do ourselves no service in grinning and bearing it silently as women are wont to do on so many fronts in their lives. While it's not common place I suspect it is less rare than we think as there are many doctors who don't recognize it. Without raising awareness of it, it will not become a priority for funding or be on more doctor's radar.
My question to you, especially those of you who have have lived with your diagnosis for quite some time and who are open about it, how do you describe it to others? Do you have a favourite website that you use for those who want more information?
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