Pet Peeves

[annekat]

I know there've been threads about this before, but not for awhile, and I need to vent.

I'm so tired of people disregarding and minimizing what I say about what having GPA does to my life. I'm trying to educate them but they just want to gloss over it. Maybe I should just make copies of the Spoon Theory and hand them out to everyone I see. I'm sure all of you and people with other AI diseases know what I'm talking about.

The prime example bugging me now is that I tell people that the disease and the meds to treat it cause mental confusion, memory problems, and fatigue, and that I just don't have the stamina that I used to have, even though they may see me out there doing "normal" things in the world with some success, just like them. Since I am 60 years old, and the offenders are around the same age, I INVARIABLY hear, "Oh, we all go through that as we get older...". Well, DUH! I already knew that! The point is I, and many of us, have a double whammy. If it wasn't for GPA, I'd actually have more stamina and youthful qualities than most of them. I think they mean well, and maybe are trying to reassure me that I'm not as abnormal as I think. But I thought they wanted to know how I was doing, so why can they not process my answer? I'm not complaining or making excuses, I'm trying to educate as to why I might not be as effective in getting things done as I was before. They are just not listening, period! Nor are they giving me any credit for having a realistic view of my life at this point.

End of rant! Any other pet peeves, here's your chance to share them, once again!

[HopeinTN]

While I'm a slightly younger 40, I get the same thing. Kind of like at the end of the work day, and after working 8 hours at the office (not to mention 45 minutes of travel to work and back and that as soon as I get home I'm online and working again), a co-worker will say "are you going home already"? Mind you, this is at 4:45 pm and I have no set hours nor is she my boss. I smile and say "yep, some of us can manage our time wisely and get a lot done in a shorter amount of time, bless your heart and I hope you don't have to work late... have a great night".

Some people just don't get it. If it's not the GPA that is slowing us down, making us sick, taking our memory, words, laughter...then it's the treatment. It's not easy being me, or any of us right now, but guess what, it's worth it.

So yes, I'm with you. Some people!

[crackers]

the problem with this disease is that there are no outwardly obvious signs of it.we may walk a little slower due to fatigue or have put on a few pounds thanks to the steroids but to the outside world we look "well".i'm fed up with the comment "you're looking well" to which my reply is "looks can be deceiving".until this disease gets some publicity that perception will not go away.
john

[annekat]

Of course, people with lupus and MS and RA get the same thing.... and if people see them appearing to be OK, they may come to think those better-known diseases are not as debilitating as they thought. Until the patients do start to deteriorate visibly. With us, since it's rare and largely unheard of, if they see us "looking well", and they'll never remember the name of what we have, it's even easier to jump to the conclusion it's no big deal having GPA. I really resent that comment sometimes, too, though people don't mean to be offensive..... I find it patronizing and dismissive, as if by saying "you're looking well", they don't need to really be concerned or think about it any more.

I know I have heard of Vasculitis all my life, on the fringes of my consciousness, but it went in one ear and out the other, and I never knew what it was until I got it. If you add together all the people with some form of Vasculitis, you will get greater numbers than just those with GPA, and I guess that would be the first step to getting more publicity for our disease and the others. I'm sure that's a lot of what the Vasculitis Foundation is trying to do, not to mention fabulous people like Marta and her ideas, and more power to them!

[drz]

I have heard the same comments many listed here. I was lucky that I had some of the same symptoms fatigue, weight gain, lack of endurance, loss of hearing in one ear, neuropathy, kidney damage, from diabetes long before i had the GPA stuff. People with diabetes have the same complaints as no one thinks diabetes is a serious problem either--just take some insulin or pills and everything is OK so I was used to dealing with the comments and people not thinking I have any serious health issues. Of course GPA made things lot worse.

People know I was sick three years ago--three months in hospital and three months in nursing home and now I am living in an assisted living complex so now they often say to me "You are looking good". I used to say "Yes, for a dead man I look good." Many people heard I was dying and some thought I had died. Usually I now say something along the lines--"yes, I am doing a lot better now than two years ago and I am very glad to still be here on the white side of the snow".

If they seem to want more, I might acknowledge I have lot of damage and limitations from the GPA but then comment on I am trying to enjoy whatever life I have left to the best of my ability. I can list specific things I can now do again like I can get out of bed, can walk some without a cane, drive short distances, live by myself and enjoy some things again. And then I try switch the topic to how they are doing.

I think people mean well and are generally happy that I didn't die and that I have improved so much. Some people also have similar health issues or tragedies that they have not shared with others and there are many I wouldn't trade problems with even if I could. Many people are fearful too since I remind them of how fragile one's health can be and how quickly life circumstances can change to something not very good.

[annekat]

Maybe we should start a collection of snappy comebacks such as "for a dead man, I look good". Some of them are pretty funny in a gallows humor sort of way.

Drz, I think it's sad that you had all those Weggie-like symptoms with your diabetes since before you ever got GPA. And it's true we do tend to think of diabetes as a run-of-the-mill disease and maybe not a big deal. There are the two types and not everyone is in really bad shape, or they don't appear to be. You are a case in point of the seriousness of it, and boy did you get hit with a double whammy, having GPA, too. Definitely, a lot of education is in order about these diseases. I think kids should learn about them in school, in detail, and be tested on them! What a concept!

[pberggren1]

I hear ya Anne loud and clear. To be honest when I meet people like that now I just change the subject or walk away. It's not worth wasting the energy on people that will not show any sympathy.

[annekat]

I hear ya Anne loud and clear. To be honest when I meet people like that now I just change the subject or walk away. It's not worth wasting the energy on people that will not show any sympathy.

I know what you mean. I guess I'm still giving them a break by thinking they are just ignorant and that's not their fault. However, I've noticed that dismissive attitude in society about other people's problems, whether health related or not, and it needs to be fixed. I still say, make the kids learn more about health issues and diseases in school, so they will better understand what their friends, neighbors, and family members are going through and prepare themselves for what they might experience some day.

[pberggren1]

You are right Anne. It comes down to the family unit being destroyed.

[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