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July, 1999 RSDHope Teen Corner

The topic for July, 1999 was: "How has RSD effected relationships with your friends?"

Liz J: Well since I just found out about RSD and have just told my friends. They've taken it pretty well although it is kind of akward between us now. You can diffently tell that theres something between us. I'm not sure about school.... I'll see what happens next year. For me alone I feel quite akward now with them.... I feel kind of different from them and stuff.

Natalie: I think that my RSD has affected my friends because they don't like doing a lot of things with me. They go to the mall or they will go places that I'd love to go with them with, and they never ask me to go with them, and they never talk to me about what i'm feeling like. If i'm in pain that day they don't really care to listen, but I'd sit there and listen to their problems but they never have the time to listen to mine. I have trouble making friends in school because kids will either tease me or they are offended to be around me cause of my wheelchair and crutch. They never want to be around someone like that. It isn't cool in my school and it's very hard because I'm the only kid in a wheelchair in my school. Guys sometimes, not all but most, won't go to dances with me because they don't like the thought of it, and it hurts me very much because I, myself, feel I'm normal. I feel that people need to know more about me and maybe they will think twice, because I'm very nice to everyone. I wish there was something I can do about it, but all I get told from all the people in my school including my principal, that I'm not good enough and that i'm just a handicaped kid who wants people to do things for me, but thats not true at all. They won't let me on the marching band with my chair and they refused to let me on the tennis team because of it. They never gave me the chance to proove i could play tennis cause I've been practing all the time every week, but they wouldn't allow it. But I think it has affected my friends a lot and I wish I could do something about it, cause I'd love to spend some time with them. I do though have to say that my one friend, Janette, is wonderful. She's been there for me and I can talk to her. And I can't forget my bestfriend dawn. She's awsome she's there all the time and I'm thankful I have her to talk to and hang out with she's been helping me through all of the rsd. She's been the best friend I've ever had.

Eve: My RSD have effected the relationships with my friends, but most have turned their back on me and will not listen, they insult me and do not understnad will not try to listen to me for why I am the way I am, or the way I act, such as what I do or say. And now I only have one friend left who had stuck with me through thick and thin, and she and I have gone to school together almost all our lives, and we still got to school together, and next year are going to the same school. She is like a sister to me, and has always been there for me, even at the times I want to push her away and not want anyone's help. She was still there at any attempt of anything I did, and she is one of the best friends I have ever had . My x-boyfriend, who was just a friend to me and was like a brother, never listened to me, insulted me when I did what I do, and now will not talk to me or listen to what I have to say, and that is what most of my freinds have done except for one.

Laurie: Ok..well..I have many replies for the topic of the month..Because I have many friends, and they have all treated me differently.

I have the friends who didn't want to bother with me when I was in the hospital and on deaths door. Those friends completely betrayed me..misunderstood me, and laughed at me.

I have the friends who would give me the world, and not expect one thing in return. They drove all the way to Philly ( 7 hrs ) to visit me in the hospital when I was really sick. They sent me get well cards EVERY day in the mail, and they understood that I wasn't going to get any better. But, they still loved me.

And I also have friends who don't know anything is wrong with me. Of course something is obviously wrong, but they've never asked and I've never told. Sometimes I think it's better this way. It's not that I'm hiding a piece of myself, but that part of me makes me feel insecure at times, and so I don't share it with many people.

I have friends who ask why on earth I have a handicapped sticker on my car.. I look normal..and those friends don't really care, but are curious. ( So, I guess they're more like aquaintences. )

And now I have the friends I've met in college. The mature, loving, caring, and honest friends. I had a really hard time in high school , but now that I'm in my second year of college, I've seen that people really do have hearts. I have a friend now, Liz..She is my life-saver. I love her..she knows all about RSD , and researches it for me. She comes with me for my injections, and she loves me even though.

So, it's those friends you have to look for. My boyfriend is a lot like Liz..very concerned, but he doesn't ask me how i am every minute of the day..Because that would get annoying. He respects me enough to leave me be when I'm in so much pain I don't want to be touched. And he pushes me enough to make me go on the roller coasters even though I'll hurt a bit afterwards. I think it's important to look for relationships that build your character and the other persons character at the same time. You'll see , most of you..as you get older, that friends don't care if you have RSD..well,they care, but they won't use that for pity or against you in any way. Let your friends know who YOU are, not that you're just a person with RSD.

Sorry this was so long....

Love,
Laurie

Betsy: How has RSD affected relationships with my friends? Well, over the years, I've had a lot of different reactions from friends. In middle school, I had one friend who was horribly mean to me, just because I couldn't participate in gym class. She would basically call me a faker, and just make me feel horrible. I don't know what her problem was, but it really hurt.

At the end of 8th grade, my group of friends totally excluded me. I don't know why, and I don't know if it had anything to do with my illness. My guess is that it partially had to do with my RSD, but not totally. I was unhappy and friendless for the whole last week of middle school, and it felt horrible. That group of friends included the girl who was so mean to me.

Last year I met up with a friend from Sunday school, as well as a group of new people. Jenny, the friend from Sunday school, knew a little about RSD, but none of the others did. I purposely didn't tell them about it...I didn't want to go through the whole explanation and risk their rejection because I wasn't "normal." One day, one of the friends in this new group came up behind me and tapped me on the shoulder. I hit the ceiling in pain, and she completely turned on me. I eventually forced her to listen to me, and I told her what RSD is, etc. She said ok, and she started being nice again. This went back and forth, with periods of sheer cruelty and then acting like nothing ever happened. At the end of the year I decided she wasn't worth it, after she started being even worse than usual. She actually tried to hurt me. She sent nasty notes, one of which accused me of "limping on the wrong leg"...like I was faking my pain! That really hurt.

Another friend once told me that I was depressing. She's not mean, but I can't talk to her about important. Because of that, she's not a very good friend. My friend Jenny is still around at times, but she doesn't go out of her way to see me. I have been in the hospital 4 times this year, and she didn't even call me when I got home to see how my surgeries went.

My friends at camp tried their hardest to understand. When I cried from pain, they tried to comfort me. Some of them were in awe of what I had to live with: at that point a useless right hand, constant pain, and an ankle that collapsed when I walked on it. My friend Jorie stayed by me the whole time. We e-mail each other, and she slept over on New Year's Eve, even though she lives 100 miles away in Chicago.

Two of my camp friends came to visit me in the hospital, the first time I was there. My doctor is in Chicago, and so are most of my camp friends...even though I live in Milwaukee. I talked to them on the phone. Some of them called me long-distance when I got home, just to see how I was doing. Camp friends are different from regular friends...there's a deeper bond, which comes from living together for a month.

And then there's Liz. I met Liz at camp this summer, when I spotted a girl with wires and electrodes stuck to her leg (TENS unit). Over the past 11 months, we've become much closer than all of my other friendships put together. This year, Liz's RSD spread from being in her right leg to her entire body. Her right arm and leg are useless, and she's now in a wheelchair. It was terrifying for both of us...but of course, it's much worse for Liz. She has to live with the unbelievably horrible things that are being done to her, and I don't. I'm her support and she's my support. Having someone who understands just 10 minutes away makes all the difference in the world. Having that person be a friend as close as Liz is to me is even better. It's been a very hard year for both of us, and I'm glad that I've had her around. Right now is the hardest, but I'd really rather not get into that...I'll let Liz post on that, if she wants.

That's the effect that RSD has had on my friendships: I've learned who are my friends and who aren't. RSD hasn't had any positive impacts on my friendships, but it's shown me some things about other people.

Love,
Betsy

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