Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group Marriage & AS

lindy,

i agree with shauna!

every one of us has strengths and weaknesses,

and the "healthiest" people in the world can develop a health problem at any time,

you just know what you're challenge is,

hopefully you see on here all of the stories of couples and realize, our partners don't see illness when they see us, they see someone who loves them, someone who they love.

some met their spouse before their illness manifested itself, others well after, so, i do believe you will find someone to share your life with, if that is what you want, and i do believe whole heartedly, not only do you deserve love, but that you have so many special gifts to share, that other person would be lucky to have found you.

Thanks for the comments. It's always so wonderful to have the support of folks who go through the same problems/worries. One of my friends on Facebook has been struggling with the same question.

I think the Apostle Paul summed it up well when he said "Are you married? Do not seek a divorce. Are you unmarried? Do not look for a wife." Don't go looking/seeking/stressing after relationships. He goes on later to say that if someone develops an attachment to another, by all means get married. This is exactly how I think about AS and marriage. Don't go looking, but if an attachment and understanding develops after you have been completely open and honest, then it's not a bad thing. It was meant to be.

I think the ideal match might be someone else who goes through similar health struggles. But then again...I wonder if I could put up with hearing my own problems.

Lon, I must say I am also humbled by these questions and responces. I have been married for 36 years and some of those questions, in addition to "what if's", still plague me today. Though I was not diagnosed back before I was married like many now a days. I can't immagine not having my 2 wonderful (grown now) children. How empty my life would have been without my husband and children.
Cindy

I'm a little worried about this topic myself. My AS is really active and I'm engaged. He has to pick up some of my slack and I know it will only be more and more as I worsen.
Children just compound that worry.
a) How would I live with myself if I gave this disease to my baby?
b) Wouldn't it break me to even give birth?
c) How fair is it really to bring children into this life.

Hello Emily

Your concerns are totally understandable, hon.

I just looked up passing AS onto your children on the web... and this seems to be a popular opinion...

"If someone with the genetic marker (HLA-B27) has a child,
there is a 50/50 chance they will pass it on to
their child; however, there is still only a small
risk of the child ever developing AS."

It seems that you pass on the predisposition to getting it rather than straight passing on the AS if you get what I mean?

I have had AS for over 10 years, I have 3 children and I keep a close eye on them (as I know others on this site do)... One consideration is, that if they do ever show any signs of AS I can get them checked out very quickly... getting a DX and the right treatment method is half the battle, I think.

Life is full of very tough decisions, alright

Hi, I only have experience/opinions on some of your questions.
1. Yes
2. It's different for everyone.
3. Probably better than it is now.
5. Nobody can provide everything for anyone else.
6. The predisposition for auto-immune diseases can be inherited. While I had no problem conceiving, I personally would have though long and hard about adopting rather than pass this on to my children ~ IF I had been diagnosed when I was young.

Emily, having gone through these stages of my life already and on the other side, my advice to you is, don't throw away your happiness because you have AS. You and your spouse to be need to be perfectly clear, open and honest about what is going on with your health and all concerns should be openly discussed. You hubby to be should be %100 involved with your medical appointments and understand everything so there is nothing he doesn't know before you get married. The decision for children is a personal one between the two of you, but your marriage must first start on a strong foundation. As I said earlier in this post, I can't immagine my life without my children, how empty is would be. I can understand your dilema though. I did not know I had AS until my children were already in their teens, though I had many signs since age 12, I chose to ignore them. I hope you find happiness, life only happens once.
Cindy

Many others on this board have gone through full pregnancies successfully (and several). Think about it this way - during pregnancy, there's info that your immune system will relax, hopefully creating less need for medication (hah...maybe have 18-20 kids?).

Also, nature/nurture. Since you know a child is predisposed to AS, you'd make sure to create the optimal diet - lots of vitamin D. Low grains, tons of veggies, quality high density meats.

I'd say let your husband read about AS, but then remember that no case is classic. Some folks go into remission - some get worse - some stay the same. There's really no way to know, but you can always do 100% to take care of yourself.

Emily, the older I get the more I realize that we all bring baggage to a relationship. Those of us who live with AS may bring slightly different baggage, but so does anyone who's ever been through divorce, been abused, is depressed, has some other illness, grew up....

Basically, we all need our partners' understanding at some point. I know you feel like you'll be a burden or something, but really, you won't. Especially if he truly loves you for who you are. Your AS is merely a part of the whole that makes up you, Emily.

a) You'd live with yourself the same way all the other moms here do. Your baby will be the centre of your world and you'll love it no matter what.

b) Not necessarily. Some women find that pregnancy puts AS into a remission. Unfortunately, that doesn't hold true for all women. Regardless, there have been studies on pregnancy and AS and your doctors will help you make the decisions that are right for both you and the baby.

c) Well, now we're into philosophy. That's something you and hubby-to-be will have to decide. Really, for all its warts, this is not a bad world. There are good people and bad, good situations and bad. The values you instill in your child will make a difference to him/her and your descendents. It is through children that we have the opportunity to make a better world, by teaching them about life and responsibility, the environment and war, and love... most importantly, love.

Your fears are understandable, but please do not let fear determine your decisions. One of my favourite movies gave me this quotation: A life lived in fear is a life half lived. It is true. Live your life as fully and completely as you can. Make the decisions that will contribute to your longterm happiness, rather than a short term desire. And live in love.

Hugs,

1 Do you think that one with AS should get married? I have been married for 10 1/2 years and diagnosed with AS 9 years ago. My husband is VERY supportive and really helps to keep me going when I have bad flare ups or issues with depression. I don't know what I'd do without him.

2 What will be the quality of life? Each person makes his/her own quality of life. You live how you want...

3 What will be the quality of life if i follow NSD? No different than any other diet really. Just depends on how well you follow it. I just started it about 1 month ago and it's so easy now, I don't even think about it.

4 What is the quality of life with Anit-TNF? I currently take Humira and wasn't able to walk prior to the TNF due to the severity of my pain. I'm afraid to go off of it now since I haven't had that issue since I've been on them but I could probably do okay now with NSD, exercise and better knowledge on how certain things affect my life.

5 Can we provide everything to our better half? You can provide everything you are willing to give. I'm a newbie to AS (fully informed, AS that is) as well. let me know if you need someone to chat with. I would LOVE to have someone to find out new things with!!! :O)

6 Will AS (just AS in mind) cause any problem in consecption of children? I was diagnosed when my oldest son was 2 (he's now 10). We wanted another child and were told that we couldn't have one with all of the meds I was on. Being stubborn, I refused to believe the "no". I found another Rhuemy who suggested the TNF meds. Best thing I ever did!! My second pregnancy was so easy and nothing I was on effected the baby. He is now 4 and healthy as can be.

Life is what you make of it. I've decided that my life is going to be all about living and NOT my AS. I am NOT a condition, I am who I've made myself to be. Live how you want to live and leave nothing to chance.

Hope this helps!!!

Heather