[*~aurora~*]

I was making brownies tonight for my birthday, and this sophomore girl I've had at least two classes with comes up and starts talking to me. "Are you a freshman? No? I haven't seen you around!" Then I sighed and said, "Yeah, I usually use a walker." So then she magically remembered me and wanted to know all about how I was doing and why I used the walker. :sad: Apparently the only thing people remember me for is using a walker, even when I have classes with them.

She didn't get any brownies, fyi.

 

[Rose Maclean]

Shame Rachel. I am sure it must seem that way you sometimes, because you are the one who has the walker, but I am sure that most people don't see you that way. They are just thoughtless and insensitive. Oh, and I wouldn't have given her a brownie either, although it could have given her another reason to remember you next time she sees you! ha ha.

The rest of the world is on another planet. I was once accosted on a packed aeroplane by a stewardess who grilled me very loudly about whether i was sick or scared of flying. This because I have to use a very greasy cream on my face to keep my skin moist, which she thought was sweat and also I have an intentional tremor, so was shaking from head to toe. I thought it was quite funny, but I have determined to see the positive in every side of this illness that I get the opportunity. I like Lance Armstrongs motto, Live and finish strong!

We all understand. Most of us have no outward sign of illness, so are faced with people wondering how you can be sick, when you look well (a malar rash can give you beautiful rosy cheeks!), so some on this sight might be jealous that you have some evidence! Joke!

To not have a diagnosis is a very hard place to be and its stressful and frustrating. Hang in there. There will be a breakthough for you around one of the corners of life.

Love rose

 

[*~aurora~*]

Yes, I do have a lovely malar blush rather than a scaley rash or anything. ^_^ I thought it was just naturally pretty, lol.

When I'm on a different campus it'll be easier, I think. It's just frustrating to feel like I'm being simultaneously stared at and ignored.

 

[Maia]

In a way though, it was nice of her to talk to you about it and want to learn about your illness instead of just say "oh" and walk away. It's hard for people to know what to do & I think she at least made an effort.

When I was early in my diagnosis, I was very difficult to please. Sometimes I wanted people to acknowledge my illness and make some things easier for me if they could, and other times I didn't want to be viewed "only" as someone with a disease label and wanted my independence! Sometimes I wanted to talk about it, and other times I'd be mad if anyone brought it up. And people around me didn't know what position I was in until too late....

I've mellowed over time, and don't find that I have problems with people about it much anymore. I just muddle on and discuss things only if they come up in the natural course of conversation or among my closest friends and family. I do find that you can choose and steer a conversation to go the way you want to... most of the time

I hope things will get easier for you as well in the near future.

 

[LolaLola]

Hello Rachel, I know what you mean. Someone my Daughter knew from school met her recently and said "I remember you, you were the ill one"!
Immi is nearly 18 and really does not like to be defined by her illness. She hates negative Lupus talk and would casserole her left arm rather than talk about symptoms. She has learned to speak up for herself very well with Doctors though, and is pretty well informed. As a Mum and fellow patient it can be hard for me to get the right balance with her.
x Lola

 

[onetay]

Rachel,
I remember being in college and it was not a very easy time. I was working and studying and taking care of 2 very young kids and my parents. I was lucky to remember my teachers names lol. I am sure she did not mean anything by remembering you as the one with the walker. Sometimes it is no different from remembering someone as the kid with the reddist hair or the best tan. I am totally bad with names so I use things to remember people it is just easier for me. I have my mickey D drivers the early one and the 8 pm one. I told you I was bad with names lol's and I have been dealing with them for the past 5 years. I am sure she is a nice person if you give her a chance. I am sure that things will get better for you and sorry you didn't get the brownies for your B-day.