Sunday, February 9, 2014

To share...or not to share.

When going through a very personal battle, a big part of that battle is whether or not to share it with others.  First question is whether or not to share it at all.  Second question is how much information to share.  Third question is who to share it with. 
When going through something that others may be uncomfortable dealing with, it makes those questions even harder to answer. 

I have a medical condition that is chronic, there is no cure for it and treatment for it is unreliable at best.  It is extremely painful (in fact it is listed on several medical sites as one of the top 10 most painful conditions) and the pain can be debilitating and cause even basic mobility to be a struggle.  Sometimes sitting, standing AND laying are all painful for me...all at once. 
On top of that, this condition is embarrassing and depressing.  It is something that may disgust others, although it is not an infection and it is not contagious.  It is an autoimmune type condition. 
It is horrendously difficult to not end up depressed and angry because of the changes it makes to my body, the limitations it puts on me and the almost constant pain it causes me to endure. 

Even as I'm typing this, I still haven't fully decided if I'm going to disclose within this post the name of this condition.  I can count on one hand the number of people who I have discussed this with and 4 of those 5 people have only found out within the last few months, yet I have been battling this illness silently for approximately 10 years.  It has progressively worsened over the last few years, which was what caused me to reach out and get an official diagnosis and to tell those that are closest to me about what I am struggling with. 

As I finish up what I knew I wanted to talk about, I still haven't reached a conclusion about whether to share my actual diagnosis with the world.  So, because I'm not certain I am not going to post it in here. 
I will however share it personally with those who want to know.  So long as you approach it with compassion and an understanding that while this may be an unpleasant thing sometimes, it is not something you can catch by being near me.  That is my biggest fear with sharing this with others.  I don't want people to look at me differently.  I don't want people to worry about touching me (because I am most definitely a hugger...I love me a good hug!).  So, if you can understand that, then you can message me privately if you want to know more about this.  But keep in mind, that I may tell you that you are not somebody I want to share this with.  This is a very personal battle.  So, if you are somebody that feels close to me, feels that they could provide me with support during this, then please feel free to reach out.  

The main reason I wanted to share this with everyone is I want everyone to understand me.  In addition to my fibromyalgia, I am also battling this.  So, please don't take it personally if I only make tentative plans with you or if I end up cancelling or backing out of plans.  I don't want to be a hermit or a recluse, but when I am in extreme pain, I need to remember my own limitations or I will suffer even further.  

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