Don't Pity Me

Something that happens a lot when you have a medical condition / disability is that you get WAY too much sympathy.  You are treated as a porcelain doll, and as if you are less than human.  Because of all of this, we both decided that we were going to write a letter to all of those looking down at us.  We do not want to be mean, or rude.  We want people to understand our side of the story, and for people to see us as “normal.”  While no one is truly “normal,” we do not want to be seen as our illness, or disability.  

An open letter to those around me,

You are someone who knows what “is wrong with me.”  You know that I am sick, that I have limits, and that I am “not normal.”  You know that I am a frequent flier in the hospital, and have been to more medical appointments than you can dream of.  You always make sure to ask how I am doing by either contacting me, or (what happens more often) you contact my family.  You always want to know what is happening, and what to be in the loop.  You want to know about new treatments, appointments, and what the specialist has to say.  While all of this is nice, there is a downside.  This problem is that you are showing sympathy.  Sympathy is defined as feelings of pity and sorrow for someone else's misfortune.  I do not want your pity, I want to be seen as who I am as a person, and not my disease / disability.  I want to be treated as a person, and not a statistic.  

You are the person who goes behind my back to ask family members what is wrong with me, instead of asking me.  You look at me with sad eyes when I say that I cannot go out, and pity me for not being “normal.”  You make it your business to know what is happening during my appointments, but never truly ask how I am.  You are the person who makes comments along the lines of “aren’t you a trooper,” “you’re an angel,” etc.  You are family, friends, peers, and more.  You are an important person in my life, but I want you to treat me as a human being.  I am a college student, I am a sister, I am a daughter, I am a friend.  I am not a disease, I am not broken, and I am not a porcelain doll.  

In the future, try to put yourself in my shoes.  You would not want me going behind your back.  You would not want me thinking of you as less than human.  You would want to focus on other things than what is happening medically.  Please do not be afraid to ask me a question, I do not bite, and I know more about how I am doing than others.  I know my medical condition(s) are confusing, they confuse me too.  I know you have good intentions, but I want to be seen as myself.  

Thank you for your time, and thank you for listening.  My life is something that I cannot really control.  I did not decide to get sick / have this condition.  I do not get to pick which days I show symptoms.  I am at the whim of a body that does not like to function properly.  I appreciate your concern, but I do not want pity.  I just want you to look at me like you would anybody else.  

-Nemo and Tremors