Pet Peeves

**drz** · 01-26-2013, 09:21 AM

Originally Posted by Jennie

Hi Everyone

One of my pet peeves is when someone asks "What's the name of that thing you have?" Especially when I've told them a number of times already. Not many people know that I have this so if I have shared this info it's because I think they would care enough to remember.

Jennie

I now give them the abbreviation of GPA but that it is still hard to remember. It took me a while to learn to spell it so I don't fault them for not being able to remember the name. Most people can't even remember it is a type of Vasculitis even after you explain that to them or my complications caused by the disease. Some people seem able to remember the name of the illness while others don't, not sure what it means but I don't assume it is a lack of interest.

**Jennie** · 01-26-2013, 11:14 AM

Good point drz, and i would not expect acquaintances or friends I don't see often to remember. However, I expect more from immediate family and close friends.

**annekat** · 01-26-2013, 03:02 PM

Originally Posted by Jennie

Hi Everyone

One of my pet peeves is when someone asks "What's the name of that thing you have?" Especially when I've told them a number of times already. Not many people know that I have this so if I have shared this info it's because I think they would care enough to remember.

Jennie

Yep, I'm with you. I guess that's one thing about using the new name GPA, it might be easier to remember, but not after you've told them what it stands for.... I'm thinking lately I should just say Vasculitis.... at least that word sort of rolls off the tongue, they may have heard it before, and they might remember it long enough to do a web search on it or look it up in the dictionary (what a concept!), and maybe even learn something. But I do think it's weird that so many people I consider friends haven't apparently even gone to the trouble of googling our disease..... that's what I usually do when I hear of someone I know with something serious. And I did it before getting GPA, too.

**annekat** · 01-26-2013, 03:10 PM

Originally Posted by Jennie

Good point drz, and i would not expect acquaintances or friends I don't see often to remember. However, I expect more from immediate family and close friends.

I see I overlooked some additional posts before replying before. Yes, let's call it Vasculitis, and if they pursue it further, we can say GPA... then if they google Vasculitis they'll see GPA as one of the types. I too am dismayed when close family and friends don't make more of an effort. It makes me wonder if they'd even make any more effort if we had something they've heard of, like lupus or RA. Cancer, yeah, they'd make an effort. AI diseases not so much.

**Sangye** · 01-31-2013, 12:44 PM

I had a little sit-down talk with myself today about a few things and one of them was this very issue-- ie, feeling angry and hurt about people not "getting" what I'm going through.

When I look for validation and understanding outside of myself, it means I'm not giving it to myself. I always find that the very thing I want from others is something I'm not giving myself. For example, when I'm longing for compassion from others you can bet that I have none for myself. If I feel disrespected, I am surely being disrespectful towards myself. Other people are mirrors of our own minds.

This is something I learned in therapy and it has served me well. I just forgot to keep making it my habit and my old habit took over again.

**annekat** · 01-31-2013, 01:00 PM

Thanks for your valuable viewpoint, Sangye, and I agree with it for the most part.

I don't expect people to really "get" what I'm going through, but it would be nice if they would just listen, say, to my saying that it is not just old age that makes me loopy, or whatever, but I have another thing going on, too. But they would rather interpret it their way instead of listening and acknowledging what I say. I realize any discussion of illness may be awkward for them, and their tendency is to want to see things in the best light.... "you look good", etc. doesn't usually offend me as much as it may some others on here. If they are being patronizing, it is annoying, but I'm willing to cut them some breaks for being human. I can't possibly "get" some of the things that they are going through, either.

You are so right about us needing to give ourselves validation, and that how we react to others and what they say about us is a real indicator of how positively we view ourselves and how much respect we give ourselves. These are things to think about every day while out in the world! And we do need to remind ourselves often that we are responsible for how we feel.

**Col 23** · 02-01-2013, 05:24 AM

Ive given up, If someone asks me how I am, I usually respond with I've had a bad week, I broke 3 fingernails. So over it. I also find I get
more annoyed and have to really zip it when I taking more that 20mg of Pred. As if WG isnt bad enough they had to give it such a weird name.
Use humour!!!
Col 23

**renidrag** · 02-01-2013, 07:42 AM

I've had so many people tell me I look great I too have given up. Not one to complain I simply say that I am still on the right side of the grass.

**annekat** · 02-01-2013, 08:51 AM

Originally Posted by Col 23

Ive given up, If someone asks me how I am, I usually respond with I've had a bad week, I broke 3 fingernails. So over it. I also find I get
more annoyed and have to really zip it when I taking more that 20mg of Pred. As if WG isnt bad enough they had to give it such a weird name.
Use humour!!!
Col 23

Yeah, just quit saying Wegeners Granulomatosis... say GPA or Vasculitis and if they care enough to find out more, they can google it. And you are right, humor (US spelling) is important!