Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Dating with AS

Ann,

Click on Main Index above and then scroll down the page about half-way...the Women's Forum should have magically appeared for you.

As a single lady myself but WAY past 27, I know exactly how you feel!! I have kyphosis so I am very self-conscious. I usually just tell someone about my AS if there is more than a casual dinner or they seem genuinely interested. If they take me on...AS comes with it. They should have the information, I think, so if they want to bolt, they can do so sooner than later and good riddance!! Dating with AS is kind of like dating when you have small kids....some folks can handle it...some can not. I can change neither the fact that I am a mom or that I am a Kicker. I do not want anyone in my life that is intolerable of either.

Keystone stole my line...I have AS, AS doesn't have me. I live by that. It is hard to be positive sometimes and I am not always successful but I try my best to be as normal as I can in all aspects of my life. I may look comical in a bathing suit painfully walking the beach with my 11 year old but I would not trade being able to do that with him for anything!!

So don't worry about it so much, Ann. You will find out the right way for you. You will learn how to trust your instincts about who does and doesn't know!!

Take care and see you in the Womens Forum!!
Holly

Ann,

I 'm being cheaky but it's easier than with IBD......

One of the beauties about dating with the diagnosis and after the change is that the person knows you as you are now, and not the person you were, some much hassle occurs in the latter as they often grieve as well.

So it's what you make of it, and what the other person is like as a person. The improvement in drugs and the improvement still to come means that AS is not the disease it once was, so may be it's not such an issue....

Davo

Hello, It's been a while since I have posted here but this topic made me think.

I was dating a girl when I got diagnosed and she was pretty cool about the problems I was having. She was helpful and understanding or at least she tried to understand and that is all I could ask for. We broke up a while later for other reasons and I never really thought that my AS affected that part of my life.

A while later I started dating another girl and she seemed okay with my AS too, I think she got frustrated with it some times but hey, I do too. We also broke up due to other reasons but during the conversation when we actually ended our relationship she said, "If we stayed together and your disease held me back from the things I want in life, I would never be able to forgive you."

I couldn't believe it, we had been dating for almost 2 years and she had been pretty great, we just weren't right for each other. Now, about a year and half later, that is the only specific thing I can remember her saying to me. It was so hurtful and it made me realize that AS really makes its way into all aspects of my life.

I haven't dated since her, not because of that but just because I haven't found anyone. I think that when I do, I will tell her, I mean, I don't want to hide anything, plus I would rather get an idea of what she thinks before I have spent lots of time in a relationship with someone that is kind of a jerk.....

Hey Jon!

Thank you so much for replying! I can't believe your ex went below the belt with that comment. "Oh, I'm sorry, did my DISEASE inconvenience you?" Unbelievable.

I do think that whoever I date will know within the first week or so what I am going through. I would feel too guilty holding that back. And plus, that is who I am and if they can't handle it then there's the door.

I told Cody I had "arthritis" or "bad knees" before we got *cough*intimate*cough* so he wouldn't ask to go on a hiking date . . .
Then I told him about AS (after 2nd sleepover)and he took it awesomely . . . He said "Hey, that's cool. It makes it harder for you to run away!"

There are gonna be guys out there who'll get rid of you because of the AS . . . they're not worth your time. Period. I'd reccomend telling them you're "arthritic" or somesuch before you invest too much *cough*bed*cough* in the relationship . . .

DO NOT BE APOLOGETIC!!!! You are no less of a person because of AS, in fact you're MORE of a person because of it, because you have to work harder and put up with more to make it through the average day. (of course, I find myself being apologetic, which is why I think of it . . . )

*hugs*
-Bridget

Hey, I can relate. Everything appeared to be "wonderful" in my marriage before I was having chronic symptoms (2 years). I guess I am grateful for seeing this now rather than later. I'm a believer that everything happens for a reason. If I were you, I would be honest up front and let your date know about your AS....but not until the second or third date

Hello,

As I'm sure you've read by now, this is a topic that comes up pretty regularly here at KA, and no surprise there. After all, there aren't too many issues that are more important to all members than finding--and keeping--a partner who will love you for all that you are, seeing past the AS in the process.

I'll just quickly share my personal experience with you, as I don't have a lot of words of wisdom to add right now (in a hurry, gotta run):

Before my AS became too terrible--but it was still noticeable to the naked eye--I had a serious girlfriend in college who I thought I was going to marry. Didn't work out, and that was a good thing actually.

After that, I went more than 10 years without a serious partner. One or two very minor dalliances, a few serious dates that I hoped would amount to something but didn't, and many, many frustrating weekends where I watched all my friends have fun with their SOs while I languished alone yet again. By this time, my AS was full-blown, as in my spine was fused in a VERY curved position, which had me bent over at about a 50 degree angle (bent forward that far from the vertical, that is). More than once I was asked what I was looking for, had I dropped something on the floor? It wasn't until I started carrying a cane that at least those *&%&* questions stopped, and thank goodness--each one hurt more than the one before it.

I knew things were only going to get worse with the AS, not better, and that was true until the day I stumbled across the spinal surgeon who probably saved my life. He performed a spinal osteotomy on me and straightened me up quite a bit, enough that I could at least see where I was going (more or less). Was I still noticeably deformed by AS? Yup, but the surgery helped a lot. Had my first hip replacement right before the spinal surgery, so I was collecting all kinds of new body parts. Didn't help much on the dating front, however, as I was still alone.

In 1996, that all changed. I met a wonderful women over the internet, and luckily, she lived only two hours from me so we were able to meet quite easily. We fell in love, and two months after we met we were living together, four months after that we were married. These time frames were greatly exaggerated over what they normally would have been, because the love of my life just happened to be Canadian. I live right on the Canadian border in Detroit, and in this case, two hours away meant London, Ontario. Because of all the immigration hassles, we decided that yes, we did love each other, and yes, we were eventually going to get married, so what was the harm in doing it now so she could move to the U.S.?

I know, you're waiting for me to say, "Well, there was lots of harm in it," but surprise, that's NOT what I'm going to say. Yes, we did eventually seperate and we're in the process of getting divorced, but it had nothing to do with the whirlwind romance. We just realized eventually that we were better friends than we were a married couple, and that if we wanted any chance to remain friends, we had to split, so we did. I am happy to say she is still one of my best friends in the world today, as she lives only three miles away from me. And here's the kicker--she's now engaged to be married again, and she and her fiancee are expecting. Not only that, but I've become very good friends with her fiancee, and to top things off, he has the same first name as me!!! No need to say what I know you're dying to say in this instance either--we know full well this is a very odd situation and one that not many formerly married folks find themselves in. To that, I say, "So what?" As far as I'm concerned, it's a shame that more people who split up can't at least remain friends with their former partner, because let me tell you, it makes life far, far easier that way. Not only are we still great friends, but I am still very close toher parents and siblings, my parents still like her and are still friends with her parents, and my folks even like the new Brad (the fiancee). It really is kind of funny when we all get together, as we did recently to paint my deck and do some other work around my house.

The fact that we are still such good friends goes back to one thing for me, and that thing is very important when talking to another person with AS about dating. When we met over the net, I didn't tell her about my AS in our first online chats, but as soon as it became obvious that we were hitting it off, I told her everything about my AS in one very long email. I held my breath after I sent that email--I had told her on the phone I had something big to tell her--as I knew it could change everything, but luckily, it didn't. She had some health issues of her own that she told me about (depression), and we both asked a lot of questions about the others ailment. She was completely accepting of my AS, and said my physical appearance just didn't matter to her. That was put to the test soon after, when she drove to my place so we could meet for the first time (she brought a friend with her, something I would highly recommend anyone do when meeting someone off the internet for the first time). Of course, I was even more nervous about that meeting than I was about that email I sent to her, but once again, I had nothing to worry about. She was true to her word, and my appearance really did NOT mean anything to her--that was more than obvious the first time she kissed me that night.

The moral of the story then, should be pretty obvious. Well, maybe not, because it's two-fold. First of all, no matter how bad your AS is--and mine is really, really bad, trust me--there is someone out there who will love you for who you are on the inside and outside, not just for what your outside looks like. It might take a while to find that person--10+ years for me--but s/he is out there, I promise. If you do have a severe case of AS, I encourage you to use the internet to try to meet new people. Since you probably aren't able to get out as much as an able-bodied person (if you do have a severe case, that is--I know many younger people with AS are not limited in any way at all), meeting someone on the net is a great way to meet people you otherwise would never have run into. You can do this through the organized dating services (there are even some that specialize in handicapped daters), or by joining web sites that pertain to your hobbies or interests--your favorite sports team, for instance, or maybe your primary hobby, etc. Most sites like that have forums like the ones we have at KA, and many have chat rooms too, so they are often great places to meet someone who you know already shares one of your primary interests. Heck, we've even had a couple KA marriages already, and plenty of other dating situations.

The second "moral of the story" is that, in my opinion, yes, you should disclose your AS at a fairly early stage in any developing romance. No, it doesn't need to come out on a first date or a first chat/exchange of emails, but the minute you think that the relatiionship might be moving beyond those opening pas de deaux's and might actually become something with staying power, then I think you owe it to the other person to let them know that you do have this illness called AS. Now, if AS is still just a very small part of your life in that nobody would know you had it just by looking at you, the pain is manageable, and you lead an active work and social life, then you can probably adjust that timetable a bit. In such instances, having AS is not impacting your growing relationship in any way (for example, it doesn't cause you to make excuses about why you have to cancel a date, or why you can't go whitewater rafting with the rest of her friends), so why worry about it right then? If, however, you know already that the relationship is going to become very serious, then yep, we're back to "telling the person sooner rather than later." Once ANY potential relationship reaches that "serious" stage, you definitely owe it to any partner to let them know that you do, in fact, have a chronic degenerative condition that, while ok now, could get worse--much worse--in the future.

No matter when you choose to tell someone about your AS, one thing will always remain true, IMO: if they decide to cut and run after finding out, then they weren't the one anyhow. It doesn't mean they were a bad person, as some folks just can't handle serious illnesses, especially degenerative ones that cause a lot of body changes, but that doesn't automatically mean they have a character flaw. Who knows what is in that person's past? Perhaps both of her parents had serious rheumatoid arthritis that mangled their bodies in their "golden" years, leaving her (sorry, just default to "her" because I'm a guy--insert pronoun of your choice throughout!) in the helpless position of watching her parents suffer horribly before they died. In such a case, a person might have a bit of a problem if they found out a potential life-partner might go through the same thing, and they might not be able to handle that. Yes, that was an extreme example I just trotted out, but it's important to realize that someone who decided not to be with you because you have AS isn't automatically a terrible person--they might very well be a total sh--, but try to be open-minded and give them the benefit of the doubt. (Unless, of course, they make funny faces and whine "Ewwww, I don't want to be with a cripple--we'll have crippled babies!" In such an extreme case, you have my total permission to let said person know that they are a complete and utter jack--- who is nothing both a gaseous windbag who should immediately be gone so that they can go find someone who is as vain and ignorant as they are to spend the rest of their life with. Pardon my twisted sense of humor--just can't help myself.)

OK, that is far, far more than I intended to write, and now I am late for my planned doings tonight. Ah well, it was most definitely worth it. Good luck, and take some time to digest all the great advice I'm sure you received in response to your post.

Brad