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My life. My disorder.


I’m struggling these days in having to explain my disorder to other people, specifically non-bleeders. There is this blatant disconnect, it seems, in my world and theirs. Some people understand, or try to the best of their ability, but more times than not I feel like I’m being second-guessed or judged. I feel like there is a line. Maybe I have subconsciously put it there or maybe it’s just there. Either way, I feel like when I’m with other people I’m on the other side of the line. Non-bleeders just don’t understand how something so tiny to them- a drop of blood and a band aide- can be life ending for me. Bleeders learn how to prevent these situations from being life ending and how we can be pro-active opposed to reactive but at the end of the day it’s just not the same.

Another aspect that I find really hard to reiterate is the fact that I am NOT choosing to bleed. I am not suddenly bleeding because I choose to be. I am not covered in bruises by choice.  I feel frustrated because I think that it should just be a given that I don’t choose to have my body do the things that it does. I think other people know it too, at least I hope they do. But their reactions and body language prove otherwise. I totally could be reading too much into this but when it keeps happening I keep facing a feeling of defeat.

Lifelong, the word used in many medical charts and in conversation with physicians. My bleeding disorder is not going to mysteriously disappear or reverse itself. I will, for the rest of my life, have to take precautions to keep myself safe and to keep my bleeding at bay. I’m not being stubborn or negative when I say this. I’m being realistic. I think hope is great… but hoping and wishing for my disorder to go away is unrealistic and quite frankly a waste of time. Using the term lifelong is terrifying to me. It is scary to know that something that has caused me so much pain and such hard times is going to be a part of my life forever. I know though that I can handle it.

Talking with other bleeders about my disorder and my experience is so simple. You explain, they comprehend, maybe ask a question and it goes from there. I never feel like I have to defend myself because they too may have had the same experiences. I could not be happier that I’ve reached out and found other people to talk with about my- our- disorders. I’m hoping that as time goes on it will get easier to explain things to non-bleeders. I’m hoping that as time goes on I’ll build better armor against the looks and the unkind words. I’m hoping that as time goes on I’ll find better ways to explain how my life works, and how it’s different from theirs. It’s just another part of this learning curve that I am enduring every day and I have faith that one day it will get better.

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