I Need To Be Me

I am back in the U.S. and would like to address something while I am in the process of getting my life straightened out and readjusted:

First of all, POTS is invisible.  Just because I don’t look sick on the outside, doesn’t mean that I don’t suffer and am inflicted by my symptoms on a daily basis.  One thing I tell people to give them an inkling of an understanding, is check out the Spoon Theory.  I have also spent almost 5 years perfecting the art of hiding my illness.  I spent this time making sure I didn’t look sick.  Hence, my hidden truth. I can be extremely symptomatic and no one would know except myself.  I may be dizzy or fatigued but I will still drag myself out of bed and do what I need to do, unless I physically cannot.  If I am going to feel physically miserable, I would rather be happy by going to school, work or hanging out with my friends than being unhappy by myself in my bed.  I don’t like things holding me back.  If I do not make it out of the house, that means things aren’t going well.

Secondly, I dislike people asking how I am feeling and inquiring about my well-being.  Typically I will say I am okay, no matter how I am feeling.  I know that there is concern, but I am generally a private person.  I usually don’t want to share or just don’t want to talk about it.  I go to my doctors appointments alone and would prefer to even go to my surgeries alone if I could(too bad the hospital won’t let you, I’ve tried).  If I want to divulge information, I will share on my own terms when I am ready.  The there are only a few people I trust enough to share with on a consistent basis and betrayal of that trust is the ultimate way to hurt me.

Lastly, I don’t like people knowing I am sick, whether it be family, friends, people at work, or professors.  Being sick is not my entire life although it does affect every aspect of it.  People look at you differently once they know.  You get treated differently.  People consciously and unconsciously modify things for you.  I don’t want to be treated differently.  I am independent and do things on my own, even though I may suffer the consequences.  I am a proud person and hate asking for help.  I am always told that my pride will be my downfall.  Although this is the case, I know my limits.  If I truly need help, I will ask for it.  I am not fragile by any means.  I can hold my own better than others.  I am strong.  I don’t like the attention.  I don’t want the attention.  I don’t want pity or for people to feel guilty.   I do not need pity.  If anyone believes for a second that pity is my goal, then you don’t know me.

The reason I have this blog is to not get attention, to complain or for people to pity me.  The purposes of this blog are to shed light on the situation, educate people and serve as a form of release, all on my terms.  Every week I am conflicted about what I share with my audience, what I should share and what I want to share.  Each week, it is easy to write my posts because I start of writing as if I have no audience.  I spend time editing to determine which information I want people to know.  I do not feel that comfortable having my entire life being an open book yet.  To be honest, I never thought people would actually read my blog and I am continuously surprised by the number of people who read each post and the support that I have received thus far.  With that, I say thank you.



One Comment Add yours

  1. Ann marie says:

    Fabulous post!

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