Dating Dystonia, Part 1

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Dad and I at a concert one year after my diagnosis

Aside:  Recently, I’ve been posting every other Tuesday morning for the sake of consistency, and I’m grateful it’s been working.  Since I don’t want to lose the momentum of this topic or the thoughts I’m asking you to share, part 2 will be posted Wednesday morning.  

Ah, the dreaded topic of dating with a disability.  It’s amazing that so little has been written about the topic of Dystonia and dating.  The intention of this post isn’t to put a negative spin on this issue by any means.  However, in order to identify the solutions, I’ve learned I need to identify the problems first.  Then we can brainstorm how to make life better for all of us.

I’ve been single for 3 1/2 years, and while I’ve been out on dates here and there, they’ve typically never gone beyond the first date.  Thus, I didn’t unveil “Diagnosis Cervical Dystonia”.  Seriously, when do you reveal to your potential partner all those attractive qualities he undoubtedly can’t live without?  That you can no longer work, your income and life isn’t what you dreamed they would be, and that your need for support (in so many ways) may be greater than what he’s used to. It’s certainly not something I advertise on my online profile.  A level of trust has to be established before I even utter those unknown words, Cervical Dystonia.

When my symptoms first began in 2010, I was already in a serious relationship.  During the additional 3 years we were together, I became painfully aware of many needs that weren’t being met by this person.  Giving yourself time to heal from a broken relationship is always difficult, no matter the circumstances.  For me, after realizing I chose to stay in a relationship with someone who didn’t even try to be a caregiver or even meet my needs halfway, it became very daunting to find someone I trust who cares enough to do just that.

In a very literal sense, dating is like a type of dystonia.  A myriad of feelings spasm back and forth.  The stress, time and energy that are a part of getting to know someone new can be the worst of my migraines.  Demands that seem unreasonable become the intense twisting of my head to the right, with no possible way of centering it again. While not all parts of dating are negative by any means, when one person has a disability, it can be very difficult to understand what it’s like to walk in the other person’s shoes.  In both partners’shoes.

Today, I think about what I would want a significant other to know about my Dystonia and how it affects my daily life.  There are so many emotions attached to this neurological movement disorder, in addition to the physical challenges of becoming romantically involved.  While the physical challenges are very real, it’s the recipe containing all of the emotional ingredients that I want to focus on.

First, let’s add a few tablespoons of guilt.  When I only have one doctor’s appointment in one week, I feel guilty that I haven’t done more.  However, I also know how much energy I invest every day just to survive:  filling out forms for Long-term Disability, Social Security Disability and both of my pension funds; fighting continuous uphill battles with the government to actually get my SSD approved; paying bills; regularly contacting my doctors; caring for my furry kids; and maybe meeting up with a friend if my body agrees to it.  When someone asks what I’ve done on a particular day, it doesn’t seem like I’ve accomplished anything at all if I think about it from their perspective.  If I told them any of the items listed above, they’d sound so mundane.  “Well gee, today I did a few dishes, took a bath, and made some food for my dogs.”  Normal activities don’t sound like things that actually involve stress, pain and work. So, that voice of guilt lingers in the back of my mind, even though I know I’m doing everything I possibly can on any given day.

Next, mix in two cups of insecurity.  It’s nearly impossible for me to plan a day like most people.  I need to know schedules in advance so that I can plan the rest of my day around those events.  As I’ve written many times before, I can only do so much in one day.  If I’ve already maxed out my energy and pain levels in the morning, then I can’t possibly do anything later on in the day.  Plus, I may not be able to follow through on a plan anyway, if my pain has already exceeded my average level of 7 out of 10.  How can I feel secure when I never know what each moment is going to bring?

That same feeling of insecurity applies to how I feel about myself around other people.  It’s really hard to know I’m not contributing to a relationship in the way that I once could and that I may need to rely on someone more than they rely on me.  I may need more words of affirmation when he isn’t physically present to assure me that everything is alright.  That I’m alright.  That he acknowledges my existence, especially when it may be difficult for me to do so.  And even if life isn’t alright at that moment, we’ll get there together.

Of course, I don’t want to burden someone with my physical limitations.  But I do want to find love, and I do want to find someone who is proactive in helping me solve problems that allow me to engage in activities I was once passionate about.  To find that person who is conscious of the pain I may be experiencing in any given moment, and who takes an action to make it less painful.  To find that person who can understand there are days when my emotions may be all over the place and how significant it is for him to simply be present with me while holding my hand.  And to find that person who is aware that my inability to focus and remember things at times has nothing to do with me not being interested enough to listen.  When immersed in chronic pain, these are all natural consequences.

We haven’t finished our recipe just yet, but I’d like to know this.  What emotions do you experience as the recipient of care or the caregiver in a loving relationship?  Come back tomorrow so we can start creating our collection of recipes for success.

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8 thoughts on “Dating Dystonia, Part 1

  1. I think that when you know someone well, there’s a sense of comfort and security when your partner just “knows” what you need and does it. It’s that intuitive sense that transcends asking/offering help so that you can focus on other parts of your relationship. It takes the focus off the disability. This is of course with people who know each other very well. The challenge is how do you get to that point? I don’t presume to have an answer for this, but perhaps modeling that relationship? If the potential love interest could see how your parents interact with you, for example. Or perhaps it’s a matter of explicit statement of needs? Of how the needs can be met at a subconscious level and then the conscious can focus on the fun part of a relationship? What do you think?

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    1. That is the question, Sue Ann. I have been direct about my needs and have gotten varied responses. But if I don’t make those clear from the beginning, then no one will ever know, right?

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  2. It seems like the “weeding out” process is accelerated in your case. Maybe it takes more time on the front end, but then once you’ve found the type of person who can handle/accept the disability, they’ll probably be a good match, whereas someone without a disability goes on a few dates with someone before they find out they’re not a good match. Does that make sense? Of course that doesn’t help when you feel like you’re going to have zero interest. Maybe you have to strongly connect on a shared interest first? I really don’t know – just trying to brainstorm with you.

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  3. right find your commonality. Also with my husband, he doesn’t always meet all my needs, I wasn’t born with this disability. It came later. So for him, it’s a learning process. He is wonderful, but also….not omniscient. I did ask him once, “why do you stay with me? I’m a lot of work?” I was surprised his answer was “Well, you make me a better person. I would probably be a conservative jerk, look at my family, but you have a kind heart and teach me everyday to be a better person.” Also we have a lot of things we like to do together, even if it’s just watch the same shows on TV. He’s not a mountain biker, or huge athlete, but we really enjoy our simple walks (very simple and gentle) in the evenings. So, focus on what you like….music, movies, something. Because there are a LOT of lonely people out there. A lot. And you are good company. You like your fur babies, someone else out there also likes fur babies. And, with my husband, I make sure he understands, he’s MY HUSBAND, not my caretaker. If I can do it, I do it on my own. Often it wold be easier to have HIM do something. But, I had to be clear… to myself and to him, there are times everyday I really need him. There are TIMES he has to be a caregiver. But first of all he’s my partner and husband. He’s wonderful, but he didn’t sign on to be a caregiver. Today he’s driving me 3 hours (each way) for a special scan I need. He is dedicated to helping me track my illness and help me with doctors….I get flustered or not focused during appointments, so if he can arrange it he goes. I make sure always to THANK HIM. I never assume “well he’s my husband he should do this.” I also take times to say to him…. clearly, with details, at least once a week that I am noticing what he does, and it means a LOT to me. He also said that helps keep us together. I notice and appreciate, not just expect, his help and care. Of course he’s SUPPOSED TO DO THIS, but never ever forget even when dating, a thank you. And for many people, this is reason enough to be with someone with a disability. The sense that “I am doing something important”. My husband feels he’s truly doing something important in life. Dating, I’m not sure, but what keeps us together is my thanking him, not just taking it for granted… and our shared interests. Our life may at times seem to be just the illness. But the best part of having him in my life is that… it isn’t just about the illness. It’s about laughing at our shows, and those walks. They are painful, but we have a rule of NOT talking about the illness during the walk. We talk about the sky, we talk about the dogs in the yards, we see what the neighbors have done in their yards. We talk about his day at work, and what should he make for dinner tonight. Companionship is what you have to offer, an open heart. Because loneliness sucks, and you are intelligent and strong and I look forward to what tips and plans people have for dating. Disabled people are terrific people. Often with a sense of what is truly important. Normal people sometimes focus on shallow things, you will find someone that has insight also on just what is important in this life.

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    1. It sounds like you have a keeper in your husband and he in you. Communication is definitely the key, in addition to acknowledging what our partners are doing to help us. Like you said, that’s part of being in a relationship. I’ll care for my partner in all the ways I can because that what you do in a relationship. It’s always nice to be acknowledged when someone sees that you’re trying.

      I also agree with your husband saying “You make me a better person”. They’re brought into a world they aren’t familiar with and are learning about it all the time. Not only does that make them better but stronger and wiser. And you can say the same about those of us with disabilities. Had I never been diagnosed with Cervical Dystonia, I most likely never would’ve seen life through the lens of someone with a disability. Although the pain is awful, I know I’m a better person for having more awareness about the people who live in our world.

      Thanks for reading, sharing your thoughts and giving me encouragement. It’s a difficult place to be. As Dr. Seuss describes life, “the waiting place”.

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  4. God made blue roses for us they are special they are exactly what he wanted them to be. He chose that color and the beauty it brings is because he could…always remember that sweetie always….

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  5. Wow, love your new frock Vix the colour is gorgeous on you, what a bloody bargain ! How exciting to see yourself in print.Hope you feel refreshed after your zzz's, my dad is loving The Bridge too (and all those other Scanda drama's) I miss out as I'm always at work!

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