Does it bother anyone else

[murmur]

Hello again everyone, I haven't been on in a while but here is a rant I've been dying to tell people who also have auto-immune diseases,

I feel that regardless of how serious this disease is, it is often pushed aside. I constantly here stories about cancer survivors and walks for cancer and stuff like that. I understand that it is an awful thing to have, but so is having an auto-immune disease. I am still in high school, and whenever it comes up in conversation people seem so confused or have never heard of it. It drives me crazy because statistically it is right behind cancer in number of deaths. It is frustrating also because when I was on steroids people gave no sympathy as they would have if I had lost my hair threw chemo. My friends would say 'a little puffy face isn't a bad side effect.' and they wouldn't understand how dangerous steroids can be. I am frustrated with people who think that this is just a blip on the screen.

[annekat]

I hear you. I don't know how to make friends, relatives, and acquaintances see this as among the most serious kinds of diseases, without being obnoxious. I manage to throw in "potentially life threatening" whenever I get a chance. They also have a hard time seeing that this has a big effect on my daily life. I am not able to be as productive as a Weggie as I was formerly. But they think if I'm able to be productive at all, I must be OK, and therefore any drop in my productivity must be due to other shortcomings. And it always peeves me when they seem to feel that since they never heard of the disease, or even of vasculitis, that it can't be anything that serious. I mean, if it was, then THEY certainly would have heard of it! And as for the meds, either they tell me I shouldn't take them and should use alternative or "natural" methods, or as you say, they have no clue about the negative effects.

[mishb]

Unfortunately it is something that you will continue to hear

Tell them that it's a type of blood cancer, those little granulomas in your blood vessels.

A lady I worked with was diagnosed with breast cancer, but she still looked so well - why wouldn't she, it was only very early stages.
She decided, even before starting on her chemotherapy treatment, that she would shave her head to save it falling out later on - but also, so that people knew she had cancer.
Well it worked. Not only were people giving her a seat in the trains or holding doors open for her, but they now felt sorry for her.

Guess what, she didn't want people to feel sorry for her. She didn't like the questions about whether it was terminal, can they get it all out, how long do they give you.
She then wished that she didn't shave her hair off and that people would just treat her normally - but by this stage the chemo had started and the hair just wasn't there.

I guess you can't have it both ways.

I agree with you that more awareness and understanding needs to be made about AI's.
Marta is doing her utmost to make this happen

[Wegetarian]

I'm in the opposite camp, I kind of like that no-one knows about this disease, and I can tell as little or as much as I want. I've been lucky though, that my employer was very understanding and all. But I don't want to scare my friends and relatives more than needed (except sometimes I like to freak out my friends by telling about Cyclo IV's and stuff).

[NikkiNicole]

I understand all of this. I, too, get frustrated that there is not more being done to promote awareness and raise funding for getting a cure. I get frustrated when explaining to people about what I have. I wish I didn't have to follow it up with an explanation when I say I have Wegener's. Even the advice nurse today didn't really know what it was.
Too many people, even now, hear autoimmune and their brain goes right to AIDS. Yep, I have met a few of those. They weren't the brightest in the bunch. I always say "life threatening" because it is.
Autoimmune diseases can kill just as quickly as cancer.
I honestly get more sympathy for my Wegener's than I do for my cancer amongst my family ... that's a plus.

[annekat]

I agree, the opposite point of view is very valid, and I don't really want everyone to know what I have. But when in the public eye, as I am when selling my pottery, it comes up occasionally and can be awkward, and people can be oafs, just as I can also probably be an oaf. I guess we need to remember that almost everyone we talk to is carrying some burden that we are unaware of and which we wouldn't necessarily understand. I guess the important points to stress if it comes up are that what we have is rare and can be quite serious, despite appearances. After that, it's often not going to be a good time for much further explanation. Marta is our hero for her efforts to raise awareness of this and other AI diseases.

[annekat]

I too have had them think AIDS once or twice. Some don't know that AI diseases are actually the opposite of AIDS, and that Lupus, RA, and MS are included among them. Important also to stress that it's in no way contagious. Especially if you are coughing uncontrollably, which luckily happens far less often for me now.

[delorisdoe]

I tell nobody anything they don't have to know. I rarely say wegeners granulomatosis. When I am visable flaring I say "oh it's an autoimmune condition that you will never hear of and its no big deal". I don't want the world or even family or friends or strangers to feel sorry for me. I have never wanted what was wrong with me to have even close to the attention that cancer gets. Also, I have issues with privacy so my opinion here is most likely not the norm. I have taken people off of my facebook for even mentioning wegeners because it feels so private to me.

[MikeG-2012]

Important also to stress that it's in no way contagious. Especially if you are coughing uncontrollably, which luckily happens far less often for me now.

I tell people that are sick that they are 1,000,000,000 (billion) times more contagious to ME than I am to them! (-8

[Donna-from-Philly]

I have a huge extended family that is over 1000 miles away that is always asking about me so I keep a caring bridge blog. Only people I invite see it. I use it to keep my loved ones updated and it keeps things off social media. I do it because I want my face to face conversations to be about other things. I also want my teenagers to control how much their community knows about my condition. I'm missing my left eye so I can't hide my situation. I did get so mad when I was receiving treatment because if you had cancer you could get discounted parking. I was loosing my hair and was told I could get a free wig through the cancer society. I responded but I don't have cancer. The volunteer asked why I was taking chemo. I so wanted to say something sarcastic but I didn't.

My son doesn't tell anyone but his closest friends that I'm sick. My daughter has given speeches and written reports about the disease. Everyone is so different when it comes to disclosure.