Does it bother anyone else

[miracleshappen08]

In my opinion this is worse then cancer. There are so many people who survive cancer or it goes away and they never have to worry about again. But we live with it for the rest of our lives!! And no we may look good on the outside but our insides are a mess! I tell people that an autoimmune disease eats a person from the inside out. There is no way of stopping it. There is only a way to slow it done and make it not so painful

[annekat]

In my opinion this is worse then cancer. There are so many people who survive cancer or it goes away and they never have to worry about again. But we live with it for the rest of our lives!! And no we may look good on the outside but our insides are a mess! I tell people that an autoimmune disease eats a person from the inside out. There is no way of stopping it. There is only a way to slow it done and make it not so painful

It's an attitude adjustment for me to think of it as worse than cancer. I know for some, it is at least as bad, and for others, like me, so far, I can't say that it is. Yet it still has a profound effect on my life, and who knows what lies ahead. I've seen a friend go through breast cancer, taking a lot more chemo, radiation, the whole shebang, and how sick she felt for months, and the fear of it all. I haven't had to go through that but I know some Weggies go through just as bad and worse, and some die. So it depends on a lot of things, and individual circumstances, whether it's worse or just as bad. It WOULD be nice for people to recognize WG as the big W, or vasculitis as the big V, just as they call cancer the big C.

[chris.wg]

For people having issues with someone taking the jump to AIDS. Maybe this will help. At work we got a new co manager who lucky for me was someone I already knew so we talked he commented on the weight loss I told him about WG he left it kind of at that nothing else said. About 2 weeks ago while talking the subject somehow came up about sickness. Kind of instinctively for some reason I don't know I didn't refer to what I have as Wg or even a AI disease I called it a vasculitis <because it is> He has known people with Vasculitis before <thinking that is the disease name>, I did set him straight there were different types and mine was called Wegners. But that word to him made him understand the seriousness a bit without thinking AIDS.

[chris.wg]

Now the mini-rant. Yes I do hate explaining my sickness all the time or even those who know about it asking how I feel. Without understanding what was wrong in the first place. Having said that though..... I can't blame anyone. There are a lot of illnesses I still never heard of or know nothing about. And if I didn't have it I know for a fact Wegners would be one.

[chris.wg]

Sorry if there is post after post but I got late to the thread and kind of replied as I read what was said. I believe in some cancer cases compared to some WG cases WG is worse but it works the other way also. A blanket statement about any situation is never true for all situations. Everyone has their burden and everyone has their demons. Some of us get off with less then others but in the mind of that individual people tend to think how can this be happening to me. Keep in mind when saying Cancer and thinking it defines everything that disease encompasses would be like a cancer patient saying oh they just have a AI my aunt has arthritis its not that bad. I have lived with someone as they died of cancer that was very treatable but due to a wrong choice in treatment it progressed to his bone marrow. I have my ache and pains but have never been on the types of pain meds he was prescribed and still he barely would move. Sorry off that soap box I just don't want any of us to ever feel oh we have it worse then that guy. Because we do have it bad but do you honestly know what they are dealing with. This thread started because we hate how people just make assumptions about us... Lets not become them.

[annekat]

Chris, I'm so sorry for the loss of your friend. And you are so right about the error of making blanket statements when no two people's experience of this illness or most other illnesses is the same. Unfortunately, that is how people think about many things in life, in all-or-none or overly simplistic judgements, and always trying to say what is better or worse than something else. It takes something or someone getting really famous, becoming a household word, for people to automatically be familiar, and then it's always this thing or that person is this or that way, and better or worse than this or that. That is overly simplistic thinking that should be corrected as children grow up.

I agree that vasculitis is a more effective term for what we have than Wegener's Granulomatosis or GPA and what it stands for. Vasculitis is an easier word to remember. The confusion then comes in when we consider the different types and the different scenarios of symptoms and degrees of severity within each type. The world at large definitely needs to learn that vasculitis is its own autoimmune disease involving specific types of systemic and destructive blood vessel inflammation, as opposed to a secondary vasculitis symptom occurring within another disease (which I've heard happens, and could be very serious, too...). They also need to learn that RA, for example, is not always "not that big a deal", some have very severe cases where it attacks more than just the joints, and that it can be truly debilitating. So AI diseases in general are variable in severity and symptoms, and all are potentially deadly. That is what people need to learn, but it is hard, because they are used to thinking of things as always the same and predictable. I think with time, the awareness will increase for all these conditions, as more people are being diagnosed and we are out here talking about it! While trying to preserve our privacy and live a normal life... a tricky balancing act.

[chris.wg]

Thank you annekat it was some time ago back in 89 and it was actually my stepfather. But it wasn't ment to be the rant it went into that was just the best example I could give being I lived with him at the time. I have had a few others close to me as I'm sure most of us have. It was intended to just say lets not make the blanket statements we don't want made about us :P

[annekat]

Thank you annekat it was some time ago back in 89 and it was actually my stepfather. But it wasn't ment to be the rant it went into that was just the best example I could give being I lived with him at the time. I have had a few others close to me as I'm sure most of us have. It was intended to just say lets not make the blanket statements we don't want made about us :P

Understood, and many or most of us have ranted from time to time on here... I ended up being long-winded and a little rant-like myself. When my main point was in agreement with you, there are far too many blanket statements made about all sorts of things, either by us or others. Down with blanket statements!

[Bek Stone]

I know exactly how you feel people just don't get it I've also had people tell me 'why done you just take immune suppliants it'll make your immune system stronger and you won't have the disease anymore' Ah NO!!!!! It's an auto immune disease if I boost my immune system the likely hood of dying will be dramatically increased we have to suppress our immune systems in order to try to get the diease under control so frustrating you try to explain it but the just brush it off coz they don't understand but WG is just as serious as cancer as already said avout the stats yet there is very little support for those of us with WG sorry rant over. Lol

[Bek Stone]

Very very little support in Australia