I want to redeem myself from my last post, I am not as alone as I might have led you all to believe while I am going through all this hospital shit, I have my Mother, one of my close friends and most of my Mom’s side of the family, Other than my family only three of my friends know about what is going on. Yes I know I posted this on here where the whole wide world can see if they wanted too, truth is no one who knows me in person knows that I have this sitdiary except from one person. So that’s why I post everything on here it’s my way of letting go of everything that is bothering me without anyone finding out. I don’t like telling people about my illness it’s none of their business. I just wish my sister would respect that. She tells everyone about my illness and I feel like she only does it so she can get people to pity her because she has a “sick” sister. I don’t feel like she actually cares about me, she doesn’t act like it anyway. She treats me like shit, she puts me down all the time and now all of a sudden she cares so much about me and is so upset, it’s all an act.

To be honest even people I have known for years don’t even know that I have NF1 I tell very few people, It’s not that I am embarrassed by it or anything it’s just that why does anyone need to know? This is why I got so pissed off when I found out my sister was telling people, who does she think she is, she acts like she wants to protect me but in reality she just makes everything worse. It actually hurt me more than anything, I found out through one of my friends, she told him I have a disease that makes me slow those were her exact words, I honestly wanted to kill her that was the biggest lie she has ever told, and when I confronted her about it she said it was because she wanted to protect me from him, and by telling him I was slow she hoped he would back off. Luckily he didn’t believe her, because most people tend to believe everything my sisters says. She could have humiliated me, if other people at the bars and clubs overheard her saying this and believed her it could have ruin my life and reputation. So by big sister trying to “protect” me she actually ruined everything, ruined friendships and my trust for her.

Outside of my family I have only told maybe 10 people in my life that I have this genetic disorder, and that’s only after knowing them for a long time I really only tell people when I have too, out of the 10 people I have told more than half found out when I went to get surgery. I don’t want pity; I don’t want people to feel bad for me. It may seem weird that I can post this online where the world can see but than won’t go and tell someone I know in person, it because you people don’t know who I am, I am worried if I tell people they will treat me different or judge me. It’s funny for those of you who read this know more about me than some of my closet friends. And I don’t even know how many people my sister has told, it’s sad I told my mom to not tell my sister anything the doctors says because I don’t want her telling people it’s like I can’t trust her.

In a way part of me would like to tell more people, but I can’t. I can’t find the words there is no easy way to bring up this subject. There are very few people I feel comfortable talking to about everything. I have three people well two now that I can tell everything too and out of those two people only one of them I know won’t gossip or tell anyone else what I said. I have a problem getting close to people, but the good thing is these people know they can tell me anything and everything and I won’t gossip.

That’s a true friend right there. I am a real true to my word friend.

I go back to Boston next week for the tests, which is good because the issue is getting worse : /