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Dating With This Disease


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#1 barefut

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Posted 09 November 2006 - 05:10 AM

Does anybody want to share any feelings on the subject of dating?

Isn't it hard enough WITHOUT having a disease like scleroderma?

On the one hand, you don't want to say, "Nice to meet you I have a life threatening illness....." Nor do you want to keep it to yourself until he falls in love with you and then spring it on him, "By the way....." and then have him pack his bags.

There is someone I think I might be interested in but he already knows about my scleroderma and I don't know if he's interested in any kind of relationship with me or if he's just being kind and sympathetic. How could I tell? I can't.

I also feel like no one would want to get involved with me because of scleroderma. It's ugly and disfiguring, and debilitating both physically and emotionally. Too much baggage.


Your opinion/advice/experience?

Thanks,
Barefut

#2 Sweet

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Posted 09 November 2006 - 06:31 AM

I guess this would fall under advice or opinion. I'm married, so fortunately I don't have to worry about this. However, I'm a strong proponent of self worth. In my opinion you need to be true to yourself it is yourself that you truly have to live with for the rest of your life. In the end, you'll look back, ponder your life and you want to be able to say, "I liked the life I led, I didn't cheat myself out of anything, I didn't bend for the wrong reason. I underline wrong, because of course in life you will give of yourself and sacrifice things important to you for those that you love.

My advice, is to be you, you are a wonderful person, you are what you are, this disease is what it is, you can't hide that or pretend it doesn't exist. So, I wouldn't spring it on him the first date, but in getting to know each other, this is a huge part of who you are at this time, and so it's natural to share that. If he's worth it, he'll stay the course, if he's not, then good riddance. :)

If it seems I feel strongly about this I do. I've lived and learned and I went through years of living with an abusive husband. (ex) I learned so much and have vowed, to always be true to self from here on out.

OK, off my soap box. :P

You are a great person and you will find a wonderful husband out there if that is whta you are looking for!!

Love ya, Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Heidi

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Posted 09 November 2006 - 08:51 AM

Hi!

I agree with everything Sweet told you. I too am married and so don't have to worry about this issue. I am a huge proponent of being open and honest and direct. If you are interested in this man but not sure if he reciprocates, I would advise asking him. If it were me, I would be very straightforward and just tell him that you think you might be interested in exploring a more intimate relationship with him and you were wondering if he felt the same. The worst that could happen is he would tell you no....but at least then you would know and not have to keep wondering!

As for the question of when you tell someone who doesn't know....I think it would just come up naturally. As you date someone and do things together, there will come times when you don't feel well, or you can't eat something, or you are in pain...as you naturally share these things as they occur, a discussion of your disease and what it means and how it impacts your life will take place without you having to "force" the issue. Then, as Sweet said, if he doesn't continue pursuing the relations, then you are better off finding that out now.

Keep your chin up and keep those lips a smilin! :D

Warm wishes,
Heidi

#4 Sam

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Posted 09 November 2006 - 09:08 AM

barefut, I had met my husband through our children, I had told him right off the bat about me having sclero. I also mentioned that I was not sure of what was going to happen to me. We have been together since 1996 and married since 2002. So far so good.

Myself I would say go for it!!! Just come out and ask him if he is interested in seeing you again. Just be honest with him. Sam
Sam

#5 Shelley Ensz

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Posted 09 November 2006 - 09:33 AM

Hi Barefut,

I'm also a firm believer in honesty -- but in digestible bits in the beginning of any relationship, and I would recommend steering away from the "life threatening disease" aspect. I've been married for a quarter of century, so my dating skills are rusty, but this is my third marriage so it's not like I'm entirely inexperienced in dating, either.

On a first date, I might very briefly mention that I had "arthritis" or an "autoimmune disease" but that I am coping very well with it. And as soon as the subject was lightly touched upon, I would immediately change the subject or ask him a question.

At every opportunity, I would downplay symptoms rather than emphasize them (which is a good general policy anyway, since most people don't care and even those who do may have poor coping skills.)

Raynaud's can be laughed off with "cold hands, warm heart". Difficulty swallowing can usually be glossed over by pretending it was a cough or just that it "went down the wrong way."

Most longlasting relationships begin slowly and build gradually, and don't entail a heavy dump on the first date. Saying "life threatening illness" or even "scleroderma" could be overload at that stage, when things are very tentative and the tendency for everyone is to bolt at the first sign of trouble on the horizon.

Whereas, showing your humor and wearing your illness light heartedly will set the example that you aren't a worrywort and would be pleasant to live with, come what may for either of you.

Believe me, there will be ample things that are important that he sure won't be telling you on a first date, either, so I don't think its hypocritcal. What you want to do is buy the emotional space to see what you have in common, completely apart from the illness, because you would be looking for a friend and a partner, not a nursemaid or a doctor.

In short, trot your good humor and interest in him out to play on a first date! I would save all talk about "scleroderma" for a later time, and then only gradually introduce the subject. Otherwise, it runs the risk of thinking that he's only with you because of a pity trip. And you deserve someone who loves you, not someone who feels sorry for you, and who wants to be with you, not just take care of you.

Even if he already knows you have scleroderma, I'd still stay away from the topic on a first date, because that is the point you are exploring things you have in common, and odds are fairly good that he does not also have scleroderma.

Some people may reason to tell about it right up front and present it at its worst, then let the chips fall where they may regarding a second date. But I think that's about as sillly as confessing to any other unpleasantness, bad habit, or all the skeletons in the family closet.

There's a time and place for that, later on, as the relationship becomes more solid and more able to absorb each other's quirks and burdens without being sunk by the sudden weight of it all.

To approach him, just ask him if he'd like to have coffee with you some day this week. If he turns you down, it was only for a cup of coffee, and not for a lifelong commitment. Or do whatever else strikes your fancy!

But I say go for it. If for any reason he doesn't leap at the chance, it only means that someone else even better for you is waiting just around the corner.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 barefut

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Posted 09 November 2006 - 11:43 AM

Thanks for all the replies guys!

All good advice. I believe in being totally honest too - sometimes I'm too open and honest. Okay, all of the time I am too open and honest. I can scare people off with it sometimes. And SOME people, I won't mention any relations, like to use it against me. I'm learning....

Keep the replies coming I think this is a good topic.

#7 scleroguy

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Posted 09 November 2006 - 02:10 PM

Hi Barefut,

I am dealing with the dating issue also( but from the male perspective ). I am 51, divorced, with 3 children. I stopped dating the last few years because my children and this disease left no time or energy for anyone else. I just sent my youngest off to college and now am begining to start dating. To be honest, I have not really decided what I am looking for.

First, I am not sure that I have much to offer because of the disease. I have very limited energy, can't do a lot of things or go a lot of places. Asking another person to deal with the problems of this disease seems like a lot to ask when I am so limited in what I give back.

Next, I am not sure that living with someone else would be a good thing or add to my quality of life. I always believed that I would marry again after the kids were grown, now I am not so sure. I am now used to living with my two cats and this disease. I am not sure that marriage now would be worth the extra work. Maybe a good marriage would be different. What do the married people think?

I have so far been very open with the women that I have met, and so far have told them about the scleroderma on the first date/meeting. The subject usually comes up when they ask me what kind of work that I do. Because I am on disability, I usually explain why.

Ron
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#8 Claudia-DR

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Posted 10 November 2006 - 02:31 AM

Hi Barefut! You've gotten some great advice and insight from these folks regarding this issue. You know, as I'm single again as well, I also wonder about these things.

It may help a bit if you think about it in another way... What if you happened to be in love with a wonderful guy who had health issues? I doubt you'd stop liking him because of it. You would be concerned in a caring way, but I bet your feelings wouldn't change. Think about it... :)

Have a great week-end!

Tropical hugs,

Claudia

#9 barefut

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Posted 10 November 2006 - 01:10 PM

Thank you all for your stories and great advice.

I think I will best handle my situation if I stop thinking of him as a potential date and just keep him in mind as a friend and the father of my son's friend and then just wait and see what, if anything, unfolds. That's gonna be hard to do because he is so sympathetic, kind, and sincere - qualities I haven't eperienced from a guy since my highschool sweetheart (he's also easy on the eyes) :rolleyes:

Barefut

#10 tmgilbertpt

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Posted 12 November 2006 - 03:26 PM

Hello,

I have been waiting for a topic on this. I am divorced and have been in the dating world for about over a year now. I always struggle about when to tell my date about my disease. Unfortunately I have severe morphea on my arms so I cannot hide my illness for very long. I also have a scar from where my port was placed for chemotherapy. I have learned if I wanna get rid of the guy I just tell them " I have a life threatening illness, have been through chemotherapy twice, cannot have children, am in menopause at age 30, have autoimmune hepatitis, and have no idea where my life will lead me." Okay so sometimes you have to laugh to make it through all of this. I know my illness has scared away and has been the cause of my many breakups, including my marriage. I just tell myself the right guy will be able to handle my disease. I would rather know sooner than later if the guy can't handle it...eases the heartbreak some. My advice on when to tell the guy..definitely not the first or second date, unless you wanna get rid of them. When I see things starting to get a little serious or I am starting to have real feelings for the guy, then I gradually let them know a few pieces of the puzzle and take it from there. Good luck
Tammy