Sunday, 4 November 2012

Disclosure post

Image courtesy of http://www.suitupordie.com/
"Sharing our stories with others, gives our pain and suffering purpose. It offers hope to those who may not have any. It strengthens both them and us. Although we may be left with scars, the pain subsides and the wound closes. We grow stronger, our character builds and we become healthier than we have ever been before".

Today I'm going to talk disclosure. What I share, what I do not share, and how I decided to share things.

When I started EMLWY, my initial view on things was to share the bare minimum, and in my first 'real' posts, I told my story but glossed over the personal things. I didn't talk about my life with this disease, instead I spoke about the disease. Just the disease. It was only in July this year, after a long time away from the blog, that I took a real look at where I needed to take my writing and what I needed to actually talk about. I needed to get personal to make the blog work.

I know now that there are lots of endometriosis blog's around, which at that point I hadn't yet found, and some of them are brilliant. They give the information that women in my situation need to know - advances in research, new treatments and ideas to ease pain, dietary advice and stories from women across the globe. But sometimes, when you're experiencing a very embarrassing issue, you want someone to be going through the same thing also. To be able to read about it and know what to do to combat it. Sometimes you'd rather read about these issues than go and actually talk to someone in real life about them.

On EMLWY, I've talked about everything from sex, to self harm, to constipation, to showing my insides on surgery photos to talking about wetting myself. And yes, it's difficult to write. Very difficult. I have friends who read this and I openly 'advertise' EMLWY on social networks and I do think about everyone reading these intimate problems I'm having and judging me. But if you are not open and honest about what this disease entails, then what hope is there for raising awareness? As I said the other day, I'm long past being embarrassed about my problems. Danny hears me moaning daily about my vagina and ovaries and, although I haven't yet gone in to any detail, I quite happily would talk about these problems in full, explicit detail, if it would make one more person in the world understand what I have to live with daily and what other women worldwide will have to deal with for the rest of their lives.

However, as open as I am about my own life, I keep details of my family and friends at the minimum. A) for all the information I share on here, there are still things in my life that I wish to keep somewhat private, and I think anyone would understand that. That's also why I don't accept friend requests from people I haven't met in real life on my personal Facebook account. I don't want the whole world knowing every single detail of my life... Not that I put every detail of my life on my personal Facebook, but I think you have to be careful nowadays. And B) if I started talking about my friends and family in full detail then it wouldn't be fair on them either. I don't share many names and I never talk about where I am going until after I've been there - or sometimes, not at all. I think you have to remember your own personal safety and the safety of those around you before the online friendships you have with fellow endo-sisters etc.

To sum up, as in life, I am pretty open to any and everything. If there is something you want to know then ask and I shall tell. In general, nothing phases me. But I will always put safety before openness.

S.
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1 comment

  1. I've been very quiet of late sorry...

    This was a really important post to make, your honesty is one of the reasons this is one of my favourite endo blogs. People like you sharing your personal journey with endometriosis helps everyone with the disease. Keep up the great work.

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