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Joanne Schiffman – Dating with Dystonia

Hi Dystonia Friends,

As many of you know, I was unable to speak at the ST Charleston Symposium in September, 2014, because I arrived in Charleston 4 hours late.  This was due to the Chicago O’Hare debacle (fire in traffic controller’s tower that derailed hundreds if not thousands of flights.). I was lucky to even get to the hotel that evening. We pulled many strings with stand-by.

I thoroughly enjoyed the Symposium and meeting so many of you, even though I was very disappointed to not be able to give my speech. I wanted to give at least one person hope that a disability does not mean that you will never find a companion or your soul mate or ever get married. I was hopeless for the first few years post d/x and then decided I wouldn’t allow dystonia to ruin my life. I would find love. And, I did.  Below is the speech I planned on giving. I would have gone into further detail during the question and answer period. Your thoughts and questions are welcome.

Dating with Dystonia

Intro

Hi, I’m Joanne.  I’m a Dystonian. Professionally,  I have been an online dating and relationship coach for the last 10 years; including 6 years post diagnosis. While I live in LA, my practice extends nationally.

Mission Statement

Let’s face it- dating and relationships with Dystonia is not easy. Some of the people in this room will tell me that it’s too challenging, while others will claim they just don’t know what to do. Today, I want to focus on the mindset and skills necessary to begin or resume Dating with Dystonia.

Here Is the Key – Mindset

From my practice and many hours of research, it is clear that Dystonians and the typical online dater share the same concerns and fears.  We all obsess about the following:

• Changing looks
• Thinning hair
• Weight gain
• Wrinkles
• Health issues

Changing your mindset can be a decision fueled by our desire for love and companionship. The only difference between us and them, is Dystonia.  What we lack are the tools for changing what I call- the Dystonic Dynamic.  There is someone for everyone with or without Dystonia.  Learn how to change your mindset, get a date and fall in love!

What Happened to Me!

“One day I realized my body had turned on me, but I didn’t think it was my brain that was causing my distress.  I had no control over my neck.  Later, gloom set in and I had very little hope for the future.  I resigned myself to being a partial shut-in and adopted a cat.  For a year, my sofa, TV and computer were my best friends…My eyes did not follow my head movement which made it hard to look in any direction.  I constantly had migraines and such agonizing stress that I could have bathed in my own tears.”

“I had to accept this new version of myself to ever experience peace of mind.  My thinking at the time:  I’m weird and damaged and nobody will want to deal with my daily struggles.  I didn’t want to burden anyone with a load I could barely handle, but I knew I didn’t want to die alone”
Eventually, the self-consciousness dissipated and I felt less like an unbalanced and inept fragment of my former self.  I remembered the way I used to act on dates pre-dystonia.  I hadn’t lost my wit, charm or sense of humor- so I decided to get back into the dating game!”

So Let’s Date

What holds us back? Here are the usual suspects:

• Fear of judgment
• Pain
• Depression
• Emotional baggage
• Compromised self- image

While we all struggle to find the best doctors, medicines and therapists to help manage these things,  think about the power of being in love.  When we are in love, difficult challenges are just a little more tolerable and managing the weight of Dystonia’s burdens can be shared with our lover.  Our quality of life ascends when we have love.

Meeting people to date can happen, as we say, organically – but might take a lifetime of patience.  So what do we do, how do we improve our odds?

Online Dating

If you are not already using an online dating site, realize that they are pretty user friendly  with a little practice  You might also want to find a dating coach to guide you through the process of presenting yourself in the best light.  So…

Join several online dating sites like Match.com, Our time, for those over 50, OK Cupid.  Remember fees vary and some of the sites are free.

Let’s Get You A Date

First, if possible, get professional pictures taken if you can.  There are actually photographers who specialize in online dating photos, who will capture you in the best light.   And remember no photo-shopping the results!
Complete an online dating profile.  You are not posting for the masses, but for that one special person.  Be specific about your interests and what qualities your partner should possess.  Don’t lower the bar because you have a disorder.  You’ll find everyone has something they would like to hide.

Dating Rules

Let’s meet for coffee (30 – 60 minutes max).

• Relax, the other person is as nervous as you are.
• Be upbeat and positive- remember you deserve love and happiness.
• Be honest, but don’t divulge any medical problems until the 2nd or 3rd date.
• No discussion about ex’s.

Smoke and Mirrors – The Art of Distraction

Managing the date is crucial for us.  Where, when, how far away, what you do, and say is within your power to orchestrate and keep your date’s focus on your smile- not your neck.  Here are some of my tips:

• Wear bright, interesting clothes to distract from your neck.
• Choose a venue that you are familiar with.  Most people are agreeable to meeting you at a place you’ve chosen.
• Select a chair that has arms to anchor your body, to help with spasms.
• Position your date on the side that you turn towards- smile and tell them you want them to see your best side.
• Occasionally rest your chin on your hands to maintain movement control, if your date is sitting opposite to you.
• Limit the date time in accordance with your physical comfort level.
• Try to keep the focus on small talk and ask your date questions.  People love to talk about themselves.
• Utilize sensory tricks to feel more comfortable- fingers through your hair, touching your face sometimes as if you have an itchy nose. Also place your index finger on your lower lip as if you are thinking.  Basically do whatever steadies your head.
• Walk with purpose- lead with your hips and strut your stuff a little.  Show confidence.
• For people whose movement is pronounced, consider taking the initiative and informing your date “oh by the way, I have a movement disorder that is sometimes limiting, but not progressive or contagious”.  Remember to smile, then change the subject.  Your date might very well divulge health issues of their own.  If it is an issue for them, remember that rejection is protection- somebody better will come along.
• Focus on whether you like your date rather than whether your date likes you.
  Most importantly feel sensual and excited about life.  Imagine more dates with this person if there is chemistry.  If not, you’ve had a practice date and you will do better next time. With online dating there is always a next time.

Once again, I’m Joanne and I am a Dystonian. Thank you for the opportunity to speak with you today.