It is NOT What it Seems…

 

Within these last few months, I have lost a lot of friendships.  I know for a fact that many people don’t understand what it means to have a chronic illness that has never been heard of….but with this blog we will be past of all that soon!

Symptoms of Fibromyalgia can arise at any moment, at any time, during any point of the day.  Because of this it makes it very difficult for me to plan my day, to attend an event, to be a host, to attend a meeting…I’m sure you get the point.  I do admit, at first I was not very upfront with people about the disease and I hid behind people and things to camoflague the reality of my life.  As the disease progressed, the less I able to do the things that I used to; which was really less than 12 months ago. My perception of the situation became that people were judging me…judging me for not attending church regularly, showing up to meetings, going out to lunch, and hanging out with them.  Notice that I said “perception” – I realize that my perception may not be the truth, but it is truly how I felt and sometimes still feel.  Instead of being honest with people, I chose to simply just not respond to invites or say “maybe I will be able to come…I’ll let you know for sure that day.”  I believe once people heard me say that, I was automatically written off.  The good thing about me saying to people “maybe I will come” was that that was the most honest thing I said to some one concerning the disease they knew nothing about.

As the disease continues to progress, it is easy to fall into isolation.  I figure why be around people who will judge me for what they do not understand…they do not understand what’s going on inside of my body.  Although isolation isn’t what I want for myself, I must rely on being self aware of this symptom as it is easy to fall into this trap.  Of course, not everyone knows that I battle this disease daily, but writing about my disease is helping me to come out from behind the very people who were willing to protect me for almost a year.

As the graphic above states “my illness wears me out” is simply the truth.  I don’t want people to continue to look at me and determine that I’m lazy, or that I just need to exercise, that I need to move around more, or get out more; because the truth of the matter is, is that I simply may not be able to.  What I can do and what I do have control over, is to pace myself throughout the day hoping that I will be able to make more events, meetings, parties, etc.

To the lost friendships, I have no hard feelings towards you or any of the thoughts or perceptions you may have of me and my disease.  I was always taught that you never know what it is like until you are hit with it or someone you love is.  Life has a funny way of altering itself.  I have mourned the loss of those relationships and I’m ok.

Through MyFibroWord, my mask is off.  I pray that those who are the closest to me understand what I face daily, and for those that don’t ask.  I am no longer hiding…I can’t help, educate, or bring awareness to the disease that way.