Need some advice about dating a girl with Wegener's.

[gwenllian111]

My husband, when we first married used to say 'im your husband, not carer' which I can actually fully appreciate from his point of view. But he's not like that now. Now he wants to 'care' and be there, and he helps me through my highs and lows.

Only this morning I was in floods of tears in bed, unable to move because of pain, and feeling very sorry of myself with my pred body (he says it's not that bad btw!!). But now I feel fine. We lead a normal family life together, and he helps support me (and each other) when we need it.

Follow your heart - but WG isn't all doom and gloom. I lead 20 good years, and a lot of that was being a 'normal' woman!

Try to look at the positive. X

[gwenllian111]

By the way, I look pretty darn good for someone with Wegeners Disease. Really!

Here here!!! It makes it sound like goodness knows what!!

[Yvonnea]

Hi,
My story is similiar to NicShaf in that I was diagnosed just after we married and started to plan a family. Yes Wegeners is ****. But on the whole it hasn't affected us too much as a couple. We have had ups and downs because of the disease, but we also appreciate the good times far more than many other couples. I am lucky in that I am well enough to work and socialise. The baby had to be put on hold due to the medication etc., but we haven't given up on that dream. I just told my Husband about your post and he is of the view that you never know what life can throw at you. I have had the Rituxan infusions and already feel so much better. You and your girlfriend are young. There are so many new medical advancements every year. Who is to say that they won't find a cure? Or Rituxan or some other new drug could put your girlfriend into remission for many years, and you can have your family etc. Don't give up on her if you love her.

[fuzzybabybunny]

Thanks guys for all the advice. I think the crux of the matter is this:

What will she be like as her disease invariably progresses? Or does Wegener's even invariably progress? What will she be like 20, 30, 40 years from now. Looking at something like Parkinson's disease, it's only a matter of time before someone with it become bedridden and unable to take care of themselves. Their loved ones have to feed them, clean them, change their bedpans, pay for medication and care, and be drained financially. Knowing this, I'm sure that many people, when given the chance, would not date someone with PD, or they would get out of the relationship early on. Yes, PD doesn't change who the person with PD is as a person, but there will be extreme hardship in the future, almost guaranteed.

Is Wegener's like this? It's fine now, but what about decades from now?

[delorisdoe]

It truly is impossible to tell but unlike parkinsons etc there is no guarantee that bad will hapen. She could live a long time healthy. Most of her life you will probably forget she has it. I for one worry all of the time about everything but I have not spent much time thinking about my health 20, 30, or 40 years from now. It is a bad answer I know. It would be easier if the answer were simply yes. I sometimes wonder how my husband ever stayed with me or married me in the first place but he has. Keep in mind there is always a chance your relationship wont work out and if it does not she will find someone else. when she is healthy and not having any disease activity her future prospects will not even need to be told right away. Her life will not end because you and her dont work out. You need to stop feeling guilty for how you feel and figure out if you want to stay with her or not. your guilt is making it hard for you to see straight. i think anyway...

[delorisdoe]

I don't need replies like "you should leave her because you obviously don't care enough about her by asking this."

I know personaly I never even thought this and I do believe that most others did not think this either. I also believe she has the very same thoughts you have.

[Psyborg]

Really there is no guarantee that she'll get progressively worse (assuming she's receiving proper treatment). We have had a lot of people on the forum that get healthy/remission and haven't had a relapse at all. There is certainly *a chance* that she could become bed ridden, incapable of taking care of herself, etc. Then you could get in a car accident and end up the same way overnight. It certainly is not a sure thing for Wegener's like PD.

[pberggren1]

Wegs is not a progressive disease like PD.

There are many many on this Forum that have Wegs and lead a fairly normal active life.

[Sangye]

Yup, like I said above, Wegs is not a progressive disease.

There are no guarantees in life. None of us can manipulate life to avoid all the possible suffering.

I'm glad you're thinking about this though. It seems like many people take marriage vows of "in sickness and in health" without truly contemplating the meaning. Even Pat Robertson came out this week and said it's fine for people who have a spouse with Alzheimer's to divorce them simply because of the disease. I thought that was disgusting. So much for the "sanctity of marriage."

[pberggren1]

Yup, like I said above, Wegs is not a progressive disease.

There are no guarantees in life. None of us can manipulate life to avoid all the possible suffering.

I'm glad you're thinking about this though. It seems like many people take marriage vows of "in sickness and in health" without truly contemplating the meaning. Even Pat Robertson came out this week and said it's fine for people who have a spouse with Alzheimer's to divorce them simply because of the disease. I thought that was disgusting. So much for the "sanctity of marriage."

Yes, I found this to be quite sickening when I found out what Mr. Robertson said. Even men of good will can easily see that society is crumbling.