Friday, June 29, 2012


Talk about writer's block-I've been finding myself a little unsure of what I want to write about. I am excited and blessed to say that I have been asked by the Dystonia Medical Research Foundation to write an article for the Dystonia Dialogue on what it is like living with this disorder in my early 20's. They want me to write about dating, college life, establishing my independence, ect. Basically everything in my life that is difficult or altered by the nature of this disorder.
I'm not quite sure why I have felt so unsure about my writing and my thoughts and believing that what I am trying to do with this blog will make a difference. I try not to let the ignorance of people get to me but someone close to me..of course, a guy I care about very much... said someting to me a couple weeks ago that shook me more than I thought it would.
One of the things that I want to talk about in my article is dating. Proving to be a very difficult thing to do. It was easy dating someone who was there from the beginning, but starting over with someone new and explaining exactly what I go through...what a headache. The level of ignorance and a lack of understanding is something that I do not know how to deal with...
"If you were healthy, things would be different." Ahh. Such harsh words. Hard to shake off. Validating all my fears and insecurities about being alone...I don't even really know how to feel about it. I know not all guys are like that but still, who says that? Who has thoughts like that? It's not MY fault that I'm not as healthy as everybody else. Insane...

Dating, not so fond of it right now. It's not like I'm contagious. I just require a little more maintenence than most. Like a really expensive car. Kidding... Honestly, how hard is it to simply be there for someone? To hold someone's hand through a 20 minute treatment appointment? I don't know what else to say about that. Dating is hard. Period. Patience is key here I suppose. Blah. Very frustrating. I feel like a .
I wonder if anyone else my age has encountered this problem.
It's one thing to think bad thoughts like that but actually looking at someone and saying "If you were healthy things would be different, maybe then we would be together." What the F*?#??????????

This isn't a very positive post. I apologize. Maybe I will gain some insight to this in the future and come back and revise. For now, that's it. Sitting with those words in my head and in my heart and trying to work through them. Trying to not let it affect me. I can't lie though, it does. It did. It hurt me.

I guess the point is that it is VITAL so surround yourself with people who understand and love you despite your circumstances. Circumstances should never overpower love and control a situation to an extreme extent. Such a shame.


  1. Just my two cents.... and you know I always have something to say. When you meet that one guy it won't matter to him that you have Dystonia. You will be more important to him that some disorder and he will love you for you - all of you. When that guy said to you what he said what he failed to realize was that Dystonia does not define who you are. It's just something that you have - and we all have have something, it just looks different. So now instead of getting the Ferrari that he could have had, he's just going to end up with some little Pinto. Glad you're writing again. I've missed you.

  2. This guy is an idiot, and is a reflection of what is wrong with how people view relationships nowadays... the truth is if you did not have dystonia things wouldn't be different. it would just be some other excuse to bail. Maybe not he did but at a time when things weren't rosy. This is the same reason I see sooo many people in their twenties that are divorced. His comment is extremely selfish putting his self centered ness on your disorder. it's assured, and cowardly to use it as a way to justify he selfish desire to keep his life be honest you are luckily his character showed now, and not years from now when you would be truly broken hearted. my friend had a 4 year relationship end with pretty much that except it was if you were healthy (she was in a car accident and c
    is super light sensitive /migraines) and you weren't taking care of your mother who has late.stage Alzheimers thing would work out.... it's awf how people use stuff like that to make themselves feel better about walking away...

    1. Hi Joshua. You don't know me but I wanted to say what you wrote is pretty much on the dot. I've had dystonia for seven years and not once have i been able to lie to myself and say things are like this because of dystonia. Sometimes I wish i could. Probably make it a lot easier. Just wanted to tell you that.

  3. Nicole, I know first hand whats its like to be treated horribly when in a relationship. 3 weeks ago after being married for 12 years my wife suddenly out of the blue decided our marriage was over. Now I have facial dystonia or tick which causes me to wink alot, sometimes travelling to my neck. Its pretty good normally and under control. My life is always stressful but when she told me that one of the reasons that she is ending the relationship was because i am ill too often, that hurt. Now she doesnt have any real reason to end our marriage as im a pretty calm characture, Im not violent, but im not great with money (always about money). And we havnt argued for a good year or so. Now i know that her comment hurt me in such a way that along with anybodys normal seperation emotions this definately took the biscuit. She new i had the problem 2 years before we got married. I tend to get headaches quite alot with my dystonia so there are times i'm in bed. It's the only way i can calm it dow, just my way of dealing with it. Im 41 now, Im a pretty good looking guy and pretty funny.
    Remembering my emotions are all over the place, im seriously worried how im going to get back into the dating scene in the future knowing that i have this problem. How do you go about explaining to someone that i wink alot. Its really difficult to know what to do when you meet someone new, I tend to tell them straight off. And then it's up to them to accept me or not. I have an idea, why don't we start up a dystonia dating website. It's a common interest isn't it. Anyway just my little way of getting this off my chest. Happy days and as everyone keeps telling me, Keep your chin up.

  4. Hey. I'm currenrly dating a guy with dystonia and have been for years. I'm as patient and understanding as possible but some days he's more in pain and feels a disconnect from people. Are there any actual acts that I can do that might help as an outsider? Do you have any advice or tips for nice things I can do for him or get him that could help out? Most of his contortions are not in his foot and leg because he has had DBS. It does get worse with stress.

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