Dating, Spouses, Marriage and Dystonia
Well, I finally thought I would be brave enough to start this topic as it NEVER is discussed openly. It's time to do so. Being single in the Big Apple, I have wondered what has dating been like for others with dystonia ? Do others date ? When do you mention dystonia to your partner ? Do you longer date or is it no longer on your menu ?
For those married, what effect has your dystonia had on your spouse ?
Supportive ? Abandonment ? Abuse ?
beka
For those married, what effect has your dystonia had on your spouse ?
Supportive ? Abandonment ? Abuse ?
beka
Tags: caregiver, coping, dating, dystonia, husbands, marital, marriage, partners, relationships, spouses
Replies to This Discussion
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Permalink Reply by BDrake on -
I am married and have been for 3 1/2 years. I aquired dystonia after only 1 1/2 years of marriage. I am very lucky. I have a wonderful supportive husband. But it's not always easy on either of us. Sometimes my dystonia is just as hard on him if not harder. I do have one complaint on the "homefront" and that is that he does try to make me quit before I'm ready to. If I'm folding laundry or washing dishes, vaccuuming etc....he sees the look on my face that says I'm hurting and my neck pulling and then the argument starts. Where I'm told to sit down and it makes me feel like a child but he does make a point...if I push it to far not only do I suffer but so does the entire family. But all in all He is wonderful!
I can only imagine how difficult it would be to date. I myself have issues with making friends. Here is an example of what I mean:
My daughter made a new friend at VBS and her mother came up to me and introduced herself. Telling me they were new here in Arkansas and had moved here from Arizona and was grateful my daughter was so nice to hers. We exchanged phone numbers and I have yet to call for a play date just because I don't want to have to tell her about my dystonia. I feel it's only the responsible thing to, just incase I spasm up on the day of a scheduled play date and I have to cancel. That way she'll know the reason why. But it makes me feel like such a pity party.
So I can just imagine how dating must feel. I know I am truly grateful for my relationship situation.
~Becky
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Permalink Reply by beka on -
To start this discussion, which is considered "taboo within dystonia" but is a very realistic aspect of the disease escially those who are young, I have added Dating Excerpts that will be published in a new book called "Two Households, One Life " in 2009.
Enjoy ( and Laugh ! )
beka
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Permalink Reply by beka on
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Hit and Miss with the Opposite Sex
How does one even begin to discuss dystonia and the dating scene? My true love had fallen off a cliff while hiking, striking his head, suffering a catastrophic injury without a chance for recovery when I was eighteen. It had been much more than a school girl crush. We were a definite match. But both Fate and Destiny had completed their jobs with my life. And both would continue to do so as the years with dystonia faded to nothing.
Dating and dystonia had never been discussed on the various online Bulletin Boards that had emerged on the Internet. Clubbing certainly wasn’t discussed. God- forbid , if it was. Neither was intimacy. Yet, there were plenty of us with dystonia below the age of 40 looking for Mr. Right or Missus. Right. My aunt was also asking “ When was I going to get married? Wasn’t it time ???”. She had never married although when she had been younger, many a men had come a knocking on her door.
Over the years I, along with M.J, ( my best friend from nursing school ) had tried the bar scene in hopes of finding and meeting Mr. Right. But he was nowhere to be found in the midst of beer-smelling fog, reeking dirty bathroom stalls and dance clubs. I really wasn’t into the bar scene anyway, often feeling out of place leaving like a bat out of hell. “ Mr. Right “ for me needed to be just that - Mr. Right - tall, fine-looking, intelligent with a sense of humor and duty, compassionate, one who didn’t force his attention on vulnerability or dystonia; one who could see the woman behind the abnormal movements and wasn’t embarrassed to be seen in public with me. Being relatively shy and quiet, my other half needed to be a good talker, but as driven and passionate as I in his own job or career.
I liked risk-takers, innovators, men who weren’t afraid to be “men “or unwilling to step out of the box. Meekness did nothing for me. Of course, physical attraction was another needed plus. But where was I to find such a person amongst the ones I had met so far ? I wasn’t a one night stand woman.
But I met plenty of men who thought I was along the way. I met Jerry, a plumber and chronic chain smoker who lived with his mother in one bar. First dates were always important with first impressions being most vital. For Jerry it was the big-screen TV at the bar that seemed to be far more impressive. I wanted to bailout early, so I wouldn’t be trapped by him. He certainly was no conversationalist. And he also forgot to use mouthwash, steadily chain smoking as he scanned the big-screen television set. I bailed out of that date rather quickly letting smoke drown him.
Then along came Mack, a gregarious Dean Witter guy- they were the ones who always walked on treadmills in the local gyms, but he did have a devilish Hobart smile who spoke in long wide- eyed bursts. I wasn’t sure if that was his Southern drawl or what ? This date was laden with expectations and the potential for disaster. The average woman changes her clothes four times before leaving her apartment or house. I wasn’t one of those; nor was I mismatched clothing wise. He seemed taken aback when I told him about my dystonia prior to the date, but he showed up on the date having done copious research, and even asked me what medications I was taking. I was somewhat charmed and horrified. Beyond that, it was just like any other dating experience. We didn’t have chemistry.” During dinner all I heard about was about fast cars, tales of big money and his“ ex- girlfriend”. The disaster came when he refused to pay for my meal. I paid for my own meal and walked away, leaving him stunned in the restaurant. On my way out I told him to go find his girlfriend. He was still smitten about her and needed to hear that from someone. May be today he’s happily married to her? I certainly hope so. It was an awful date. H. would never have treated me like that !
Bill was one of those fast paced executives who arose at dawn, arrived at work, stayed late, fumed about the days’ events and drank too much. He seemed to be in constant motion, even at rest. Did he have dystonia or some other unheard of movement disorder? I went out with the guy for a couple of dates. He took me to a movie – a horror flick – knowing that I did not enjoy horror movies. He said he would call, but never did. I knew how to hide my dystonia rather well with scarves and other neck-choking items. I began reading a book called “The Rules: Time Tested Secrets for Capturing the Heart of Mr. Right” by Ellen Fein and Sherrie Schneider. They described a set of tried and true rules for dating. They left one out – Pray to God. Marriages are made in Heaven, written by Count Leo Tolstoy in War and Peace.
Discussing dystonia on a date was difficult. Each guy was probably more curious about the extent of my sexual abilities What special needs did I have?
As far as I was concerned I had no special needs. I had never regarded dystonia as a disability anyway. The hardest part of this type of conversation was deciding “when to have it?” How does one lead into the subject on sex and disability? Do you talk about disability- at the onset of the first date, or wait until the second, third or fourth meeting? And then wait for the “sex talk “. How does one even begin talking about this hot topic with the opposite sex? These were issues never discussed at Symposiums, or in the neurologists’ office. Yet intimacy and dating is just another dimension of being a human being. We all crave it to a particular degree. And we all need it.
It’s obvious that life happens; plans and needs change along the way. Though it's never too late for marriage, kids, and or other things. The white house and picket fence will always be in need of work! Prince Charming was a fairytale, as was Prince Trainable, and Prince Changeable, but Prince I-Love-You-As-You-Are remains a true possibility. Yet, it was not easy finding him with dystonia. May be I was just too selective? But Alex, Mark, and Charles and others never made the grade for me either. I decided just to keep on going solo, not such a bad idea considering I was climbing out of the “ could a, would a, should a been“ stage and one can lose sight of the possibilities and opportunities that lie ahead. Even though, secretly I was hoping for Prince Charming to come along and sweep me off my feet and onto the white horse.
Copyright. 2008-9. TH,OL.
beka
OK, too many Julia Roberts movies...
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Permalink Reply by beka on
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OK, those married, who has a tougher time handling dystonia - the person with the disorder or the person watching their loved one ???
beka
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Permalink Reply by ramona on -
Well, that is hard to say since we can only know what WE feel like, but I suspect at times that it can be harder on the person watching than it is on the one experiencing just about any illness. My husband struggled through three very high risk pregnancies with me and I KNOW that was very difficult on him. At one point, he watched the medical team doing CPR on me through an OR window, as they were preparing for an emergency C section with our first child. Have you ever known anyone who suffered tremendously and felt so badly for them that you wanted to take the pain on yourself? I suspect that is what it can be like for a loving spouse married to a dystonia patient.
From a totally different perspective (since you DID bring this up), my husband sometimes says that he is not sure if he can touch me or not, as my body will flinch in reaction to a simple touch at times. He is a real trooper, though, and has been very supportive of me throughout this challenge. We just celebrated 30 years of marriage!
Blessings
Ramona
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Permalink Reply by JOSE GARCIA on -
I would say it is harder on my wife. Even though the last 13 months have been the pits. My treatment has become refractory to care. ST since 96.
Your right it is the first time I see the topic of sex discussed. It is important even for married folks.
Jose
Miami
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Permalink Reply by Robin Wood on -
I date ... sometimes. More so with men that I have known for awhile though. I am very fortunate that I have a lot of life long friends who have been in my life thru out my progression and they don't even see my dystonia because they know me the person.
I am very cautious with who I date and or meet. It's a crazy world out there and alls it would take was for someone to scare the pooh out of me and I would be a twisted contorted spasmodic mess and unable to defend myself. Also for this reason I don't speak of my dystonia right off the bat with people I just meet, unless of course I'm in spasms when I meet them but I don't go into detail. Having a disability like this leaves me feeling very vulnerable, a feeling I do not like as I've always been a ruff and tuff lil' girl that could take care of her self.
Robin
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Permalink Reply by Trudy on -
I love this site!!! I was just thinking about this the other day. I had been in a long term relationship, obviously believing that it was leading to 'forever' when I was blindsided by their infidelity. I believe that this, along with other stressors prompted my body to begin my spiral to Dystonia. That relationship ended in 2005 and although I am in no way ready to get back out there, I'm busy dating 'Trudy;' I am concerned about what I will encounter, how to talk about it, etc.
In the past my narcolepsy, especially before it was diagnosed, would constantly be a bone of contention with people I dated because I wasn't always able to keep my energy level up. Or they took my lack of energy as lack of interest. Once I was diagnosed living with it was easier and it just became a way of life. However, for the most part narcolepsy, while treated, doesn't impede on daily activities too much.
This is slightly different in that being tired is excusable, even if you are face first in the dinner table. Having a body that appears to be at war with itself or speech that difficult to understand makes others uncomfortable. I would like to believe the more comfortable 'I' become with being myself in public; twisty and all, the more attractive I will be to that person willing to be open to who I am entirely. Body, mind and spirit.
When will that discussion happen? I haven't a clue!!! I told my friend the other day that I fear not only will no one be attracted to me but it's been so long --- what if I forgot how to kiss!! Maybe that sounds silly but I do think that. Are there training wheels for such things?!
I may not have added anything great to the conversation since I haven't had the opportunity to date since my diagnosis, however, the topic was extremely apt to where I have been lately and I thank you for raising the question.
Peace, Trudy
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Permalink Reply by Debbie J on -
I am fortunate in that I just have a slight leftward tilt to my neck. BUT ..... at times it feels like my head is just going to jerk itself off my shoulders. I do use the sensory tricks, or just take a couple of deep breaths & "talk myself" into getting my head to calm down.
I went out with one guy a few times who said it didn't bother him as it made him feel I was really paying attention to what he was saying with my gentle nods LOL ~ he never saw me in full action though. I am not sure why he quit calling, I feel (& hope) it was because he was a recent widower & was feeling guilt for dating.
There is a guy I see from time to time, he doesn't have a problem with my shakes (from ET) or the neck problems from the CD. The thing is after being single for over 24 years I am ready to get into a serious relationship. He has made it plain he will never allow himself to get serious over any one woman. But we understand each other & I enjoy his company & at least it gets me out of the house occasionally. I don't feel the CD is stopping me from a serious realtionship as much as I, myself am. Firstly, I have allowed myself to gain a lot of weight in the past 2 years. When you no longer work, at least for me, it allows too much free time for binge eating, or eating out of boredom. SSD doen not allow for a wardrobe, so my clothes are limited if I do go out. Also, I won't tolerate a man who drinks more than occasionally.
At any rate, when I have gone out, I haven't had any negative remarks about my aches & shakes by my date. I am very picky & have ended things due to them not meeting my standards.
Trudy,
Kissing along with other parts of a relationship are like riding a bike - you don't forget how. LOL Also, you are right, this is a great topic, along with others that are on here.
Wishing all a wonderful painfree day,
Debbie J
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Permalink Reply by Ellen S on -
Jeeze, I guess I'm the only married to enter into this conversation.
My best friend is my hubby. He has seen me thru a lot, including dystonia and some pretty awful storms. It has drawn us closer. Seeing me go thru what I have, made him realize that life is a challenge for me. He's just the best.
We met when I was 14, so he "knew me when". Ours is not a conventional relationship-- long story but sweet. We met doing the things we loved the most, ensuring that we had similar likes/dislikes. Our values were the same, and a long-distance friendship melded us into the family that we are now.
Long distance relationships can work. We just had our 25th anniversary!
I was not symptomatic then tho. Even now, most people can't tell there's much wrong with me unless I storm. I am one of the lucky ones in which meds help.
There is always a way around any limitations that might occur during 'private times', it just takes creativity and a fun spirit. Yes, there are limitations, yes I'm sad to see so many changes there, but where there is a will, there is a way. Even those married to victims of extreme paralysis can have a love life... when there is that love.
Limitations open up the lines of communication... or close them. If you want to have a successful relationship with anyone, closing those lines will kill it fast. Embarrassed? Get over it, that' s life. "Thinking clinical" about those embarrassing moments can get you thru. Got a limitation, figure out a way around it, and keep a sense of humor. Humor makes all this much more bearable.
I can't believe anyone here couldn't find a special someone out there. I'm growing to love all of you guys! Such wonderful personalities. You communicate well, opening yourself up to the rest of us, exposing parts of your lives to perfect strangers with a willingness to use your own life experience to help another fellow human being. You're creative, funny, brilliant. What's not to love?
Dystonia is part of a first impression, it's true... If you can let someone in to see those beautiful hearts, and the fun personalities that reside there, I think you're all irresistible!
My opinion (and it's easy for me to say as I'm not affected too much on a moment to moment basis) is the best person to marry is your best friend. The best place to find a true friend is doing the things you love the most, and doing them often and with abandon. Can't waterski like you used to? Fine... go and watch it, or give lessons to someone else. Want to feel great about it? volunteer! Allow yourself to have fun with the part of waterskiing that you still CAN do. (just an example) There are many ways to participate in life and when one door closes, another always opens.
Open yourself up without fear of rejection, and those shining personalities will give you such joy, and there will be others who will be infected with that and want to be with you. Those that can't get past the dystonia, aren't worth pursuing anyway...
IMHO
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