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Dating And Dysautonomia


shelby
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Okay, so I posted this kinda question on my facebook forum, but thought I would throw this out at you guys as well....

I have a question for all of you about dating and dysautonomia. A little history on me quick...I have had this condition for ten years and for six of the ten years I have been with the same person, we were engaged and I just ended the engagement about 4 months ago, and now I am starting the dating thing again, which by the way I hate. So how do you explain to a possible date that you have this condition? I dont like I should have to or want to hide this because it is a big part of who I am and how I have become the person I am today. I feel like I have to give a disclaimer to people who want to date me. lol.

I dont go to bars or clubs and dont know where to go about meeting someone. So if anyone has a suggestion for that I would appreciate that as well.

So this might have been the stupidest thing to waste peoples time with, but I am hoping for some help from people who are dating or are in relationships to see how you are gong about this issue.

Thanks for taking the time to listen...

Shelby

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Hi Shelby, first, I moved your post to the main discussion because it's definitely NOT a silly question. The issues you're dealing with are common to nearly all of us here, even if we're not dating. We face the same thing when developing a new friendship, going off to work somewhere that doesn't yet know about your health issues, etc.

I didn't know I had dysautonomia when I was dating, but I was already terribly ill when I met Teri. In fact, I was nearly the sickest I've ever been. We went through my diagnosis process together, which took up the first several years of our relationship.

I've not had to date since then as Teri and I have stayed together, but I can't imagine not being myself and not being honest about my health right from the start. It's kind of hard to hide my medic alert bracelet... so if I didn't say anything on a date, I'd imagine someone would ask me what that thing was for.

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The best place to meet someone is at church! I met my wife there 26 years ago last month (June)... we were engaged a month later (after just 10 days of dating) and were married 3 months later on October 23. WOO HOO!

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I've never found a way to talk about chronic illness that's 100% foolproof, but what usually works best for me is to find a way to work it into the conversation casually really early in the relationship. For example, on one of my first dates with my current BF, he asked if I'd like to go hiking in this area that, as luck would have it, is pretty flat. I said I'd love to, but added that I might have to stop and take breaks because I have a chronic illness. He didn't ask anything further and didn't seem to mind that I had to stop and take breaks. After we had been dating for a month or so, when I was sitting taking one of my famous breaks, he asked me what this illness was and I told him more about it. He seemed really interested, so I gave him some websites to look at. Over time it became comfortable to talk to him about it on a regular basis, when it was pertinent.

For me, I usually wait to give someone a lot of information until they express some interest - whether its a friend or someone I'm dating. Some of my close friends for example don't even know that much about POTS and my struggles with it - they know I have a condition and that sometimes I have to sit down and that I always drink a ton, but they don't know anything else, none of the day-to-day stuff or anything like that. And I'm ok with that - I figure, if they are interested, they'll ask me sometime. In the beginning, when I was first diagnosed, I felt a little hurt that some of my friends weren't more interested - but then I realized that chronic illness is really hard to understand if you have no first-hand experience with it, and they probably just don't realize how much it affects me. I try to be honest with them - like if I'm having a rough day, I'll say, "I'm sorry, I can't go for a walk with you, my POTS is really bad today," but I also realize that if they don't want to know the "gorey details," it's not because they don't care about me, it's just that it's really different for them to think about.

With a potential life-partner, of course you want them to know a lot about your condition and help you in your quest for health. But I think that's the sort of thing that can unfold with time. If you start dating someone and they seem really disinterested in your health concerns or it seems like they just "don't get it" at first, it doesn't necessarily mean they're not worth dating. It might be that their education around your illness and how best to support you takes a while. My bf, for example, is still learning a lot about how to support me, and we've been together two years. I try to be patient with him because I have a lot of other supportive people in my life, so I can afford to be patient, and because I know that dealing with something like this is new to him - he's never known anyone with a chronic illness before.

Good luck and I'm glad you posted this - it's a great question!

jump

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Definitely hard to date when you have a chronic illness. But I would also say that it's hard to date when you don't have a chronic illness. ;)

As for me I recently (about a year ago) got out of a long term relationship with someone I cared deeply about but who didn't reciprocate. He and I went through the diagnosis phase of my illness together and let me tell you I went through absolute panic when he dumped me. I thought that I would never find someone who would love me as sick as I am. Throughout the next few months I dated a few people, most were people I knew in some capacity (friends first - lovers later kind of thing) Those friends knew about my illness and were supportive.

I did date one guy who didn't know. He had a fit that I didn't tell him everything on our first date so that he could have made a decision then about whether to date me. I told him stuff slowly, as it came up. I have a benign pituitary tumor and needed to have an MRI as I was getting a bit more photosensitive and having headaches. He told me point blank that he didn't want anymore "surprises" and that I was holding information back from him. I told him to "get out of my life". There are jerks out there, and sick or not, we've all met them. (I seem to attract them...)

The current guy I'm dating I've known for over six years. He knew about my illnesses and misdiagnoses and thankfully gets my medical condition. (It may be because he has some strange medical issues of his own). When I got really sick in January he was there at the hospital with me (and we had only been dating 2 months). It was then I realized he was a keeper. (LTR boy never visited me in the hospital)

I guess what I'm trying to say is 1) Dating stinks, whether you are sick or not and 2) there are jerks out there, but there are sweeties too. Good luck! Remember there are always fish in the sea and don't forget to toss them back if they start to stink. Don't let the fear of dating paralyze you into staying with either the first guy who comes along or a creep.

Sara

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jump's advice sounds great. just to second that opinion, I'll say that it's definitly important not to try to hide your illness at all, but at the same time don't beat them over the head with it. If you try to act like you're perfectly fine, as I have in the past, your body will eventually speak up for you, and it'll be screaming. Don't want that.

However, if you go into a long, tense explanation of your illness, or talk about it too much, you're likely to scare/freak the other person out and they may not want to persue the relationship anymore, which could be a big loss for them and for you.

I'm recently diagnosed and am just starting to learn to speak up for myself when I need breaks, nourishment, etc, but not drone on and on about my worries, concerns and fears like I did in the beginning - that can get old, and depressing - for you and for your partner. I was several months into my relationship when I first started to come to grips with the fact that something was wrong other than simple stress, that my body was thrown off whack in pretty major ways.

The things that have helped me keep my sanity and my relationship have been information (educate yourself, be proactive about finding info, just for yourself, not necessarily to share, unless asked, as jump said), optimism (doesn't come naturally for me) and speaking up when I need breaks/food/water/etc.

As for finding a dating pool, I would say you're on the right road avoiding the bars and such. Those places tend to house people that are into more active party lifestyles. If you can afford it, try persuing your own interests in a social environment, for example if you enjoy writing, take a course at a nearby college or university. Find places and activities that are calm and soul-nourishing, and you'll generally find people that are calm and soul-nourishing.

Like Sara said, there are always stinky fish, bad apples, etc. euphemisms, so don't be afraid to kick those immediately to the curb/garbage/disposal as soon as you realize that they are no good for you.

Good luck!

Amber

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My attitude with dating has been cold I guess. But I don't owe any explanations and if there is something they don't like thats fine - take a hike.

I think its very important to insist on first class treatment otherwise you wasting your time- anyway.

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This discussion is really interesting...many different perspectives exchanged. I recall a similar thread some time ago, maybe like two years ago or so. Anybody know what I'm talking about? Maybe I'll search it and post it in another reply.

OK...where to find people you'd probably love...I think your interests are a good place to start. If it's religious gatherings, intellectual gatherings, sports (even spectator), crafts, helping others type centers...places and groups that share your values and ideals will probably offer some contacts (who might have other contacts and friends to recommend). Many people also find partners in brothers of friends, grocery stores, workplace relationships, friends of friends. Any relationship in any scene increases your connections and possible romantic contacts.

I never dated, I have to warn you. But I've been married for six years, and I had about 170 proposals before my husband and I were engaged (age 20). I knew people and people knew people, and lots of people I guess knew them....we were a large religious community, and there is no such thing as "dating" in Islam, I mean the guy proposes (or the girl proposes) and then they sit and talk about themselves more. So like, there's a strong sense of commitment and seriousness from day 1. Both parties are interested in marriage, not just fun. Both parties want to know, as concisely as possible, how compatable they are for each other. I never spoke to anyone who proposed, except the one I married. So, I don't even know most of the other ones' names (they usually propose through intermediaries such as teachers, pastors, father or brother, "uncle" type family friends, etc).

I know most of you have totally different experiences. But I know that it's important that the relationship is always about both of you, and not just you and surely not just your disease (which is not WHO you really are although it is a part of your life). Relationships, any kind of relationship, leads to more relationships and more people knowing you. That is good, when you are looking for a husband or wife. Just make as many friends and associations as you can. Mr. Right is in there somewhere.

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  • 2 weeks later...

Interesting thread. I've been struggling to 'get out there' too. I actually have a personal ad online but I haven't contacted anyone. Dating just seems so energy consuming and stressful. I really don't think it will be fun. Although being alone isn't fun either it's just much easier I guess. <_< I've had a few dates but I never really had a girlfriend even before I got POTS- just introverted and a little picky I guess. I sort of think women will be less accepting of a guy that's sick than men would be of a sick woman because men are supposed to be the providers, the leader, the strong one. And it seems all women want an energetic guy. Even shy women want an outgoing guy to bring them out of their shell. And if I ever had someone see my place I'd have to clean it first :o OK so I've talked myself out of dating enough for one post - thanks for listening. :)

As far as broaching the topic of my sickness - I'd just ease into it. I wouldn't put it in my personal ad but I wouldn't avoid the topic either.

Jesse

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I've actually tried to internet dating thing myself since I don't get out too much to meet people. Jesse you bring up a good point about guys suffering this, as we are the minority. I once dated this girl that I liked an I thought she liked me (at least she said she did)...I didn't even mentioned POTS to her, but she did notice my hr being higher than usual and I just told her my heart beats faster than most people's or something like that. Anyway, dating was difficult because she was really looking for a guy who had a wild side as well as a sweet side. I have the sweet, but can't physically do wild :)

I truly believe though if you find someone who really likes you for who you are, and truly cares about you as a person, then having POTS or any other illness for that matter shouldn't matter. I'm long distantly "dating" someone now, and I tried to tell her about POTS and how I am suffering. She said she didn't care what I had, she'll love me either way. How much of that will be seen in practice, I can't say yet, but that's the attitude you should be looking for. If you come across someone who isn't understanding or doesn't want to deal with it, then that's not the person you should be with anyway.

By the way, any cute girls in northwest IL near IA border (near the Quad Cities) who wants a date? <_<

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Guys have such a hard time figuring out what girls want...poor souls. :)

Seriously, I think that POTS might be a blessing for a guy in terms of filtering out gold-digger women. A friend of my husband was very healthy, etc., and married a woman who robed him blind then left him (within about 3 months). Later that year, he developed a serious chronic illness. His life was in and out of hospitals after that, but he managed to meet a great woman, marry her, and they are coping with his illness together. She pays the bills, keeps cheerfulness in the home, etc. And she's really in love with him. His disease terrifies her, I can tell. SHe's afraid about the future, children, old age, everything down the line. But she's really sincere and committed. That's a lot better than the first wife he had while perfectly healthy.

POTS doesn't have to be a negative....but I think it does mean that Mr./Mrs. Right has to be a very special person....isn't that what ppl are looking for anyway though?

So good luck to all you singles.

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Thanks all for the great responses...

You all have a lot of good things to say. Today I asked out a guy from work who knows I have a fainting thing cause he has seen it, said maybe sometime, but I almost passed out from anxiety asking him out.

jbrian...used to acutally live in DeWitt close to the Quad Cities, but now live on the other side of Iowa. Looking to get to know more people so if you want to email me at shelbyjohnston@hotmail.com and maybe we can chat.

That goes for anyone though. I understand that it is great to post here, but sometimes a one on one conversation is more effective so I look forward to any new communication.

Have a great day all!!

Shelby

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I think above all, it's important to look for people who share similar interests/values and who are compassionate. I was lucky in that I was starting a relationship well before I became disabled by POTS, and though it took time, the person I was dating managed to observe and learn what I was going through and how to adapt. The key was that he wanted to learn, and I was willing to be patient and "teach" what my limitations were and why. He decided that the things we could not do together because of my health weren't that big of a deal. The important thing is our connection and the fun we have just talking together.

It's not as easy to start a relationship when we are already ill and searching for the right person to jump in. I think if you find a person with a kind heart who has suffered, you will have found a gold mine. There is something about talking with people who have endured pain that really helps with forming an understanding connection. I find that just with general friendships that I instantly feel bonded when I hear someone tell me about their chronic illness or other forms of pain and difficulty. You guys on here who share openly really show a great deal of strength, and a girl who has experienced difficulty will appreciate your strength of character and the will it takes to live well with a condition like this. The same goes for us ladies-- I think there are men who are looking for a woman of inner strength and maturity that comes from enduring hardship.

Online dating is good because it removes that initial physical demand of meeting and conversing while our anxious hearts race away. Church is another good place, or some class you can handle that provides a quiet activity-- like a writing, art, pottery, or bungee jumping class. Just kidding about that last one. :D Classes/church provide a common ground for starting conversation and also start the relationship based around a mutual interest instead of focusing on illness or problems right away.

I think that a great way to tell people about your illness is if it comes up in conversation, be brief and give a general summary as you would any acquaintance, then answer any followup questions directly and succinctly. It's really important for you to see if the person is even someone you might like before getting into the nitty gritty details of symptoms and everyday life. I think that stuff comes out in time as intimacy increases between two people.

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I've tried to do the online and in-person dating thing, but it seemed every individual I met was looking either for a person that could party 24/7, or was incredibly shallow and vain. I either couldn't keep up with them, or they refused to date someone who was "broken".

I remember one date, in particular, I went to the Denver Botanic Gardens with a really nice gal. We decided to walk around the in-door tropical forest (this was before I was diagnosed) - it didn't go over very well, and I ended up looking ill, sitting down all the time, and nearly passing out from the heat in there. I blamed it on first-date jitters, but kept going because she was a really nice and sweet gal. Unfortunately, I didn't get a call back when I called for a second date.

As was mentioned above, it's hard to break out of a social/gender stereotype that we're socialized into, sometimes. For males, they tend to need to be "strong" and such, which really comes back to haunt those with disabilities in the end. We have to find an open-minded person who's not afraid of commitment to someone with a disability.

I'm still waiting for that perfect gal to sweep me off my feet, and I know I'll find her eventually. Patience, determination, and hope; all I need, and I'll find her.

Hugs,

Cam

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