Patients Focal dystonia
Topic of the discussion
Posted on 3/6/19 4:55 AM
I hope this post is in the right place.
I have cervical dystonia and the longer it goes on, the more it impacts my daily life. I feel like people are staring at me. The people I meet tend to not look at me very much during conversations...
Is it in my head or do you have that feeling too?
Thank you very much,
Beginning of the discussion - 3/6/19I have cervical dystonia and suffer from the stare of others https://www.carenity.us/forum/focale-dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817
Posted on 3/6/19 6:33 PM
The staring is the worst. It seems like I get it more in places like airports. I refuse to use FaceTime. My kids wonder why. Duh.
The other reaction is that people think I am nervous.
Posted on 3/7/19 4:29 AM
@2skatermom and @Dyston!a I am sorry you both are going witnessing that... what do you think can be done to deal with this? Is it education?
Posted on 3/8/19 2:33 AM
Hi @Lee__R, well when adults do it, I do not think there is any education that can change it at that age... many education on the condition and parents teaching their kids appropriate behavior as a child can prevent such staring as they become adults; however, if somoene has never experienced or knows someone with dystonia or knows of the condition, I do not blame them for the stare the first time they experience it... as I think most people will stare if they see something they never knew existed. But not blaming them does not mean it does not bother me... because any and all staring bothers me greatly!
If a UFO flew in front of me and aliens came out, I would stare! But, if I had experienced seeing aliens before or knew - through facts - that aliens did exist and had seen real photos of them and they make contact with people, and their presence on Earth is common, etc.... well I would likely not stare.
So it is those who are aware of the condition or have experinced it before, but yet they still stare that really bothers me.
Posted on 3/11/19 2:22 AM
i have dystonia in my neck which twitches to one side and people stare at me a lot bc they think I’m either cold, or nervous it’s very overwhelming sometimes.
Posted on 3/13/19 6:56 AM
I suffer from the same thing. People are starting to think I have Parkisons. The whole thing is overwhelming. Makes it worse when I worry about it or get stressed or nervous. It is exhausting!
Posted on 3/17/19 1:56 PM
The whole thing just sucks..the twitching, the hurting all the time.. and when I’m nervous or mad it gets worse.
Posted on 3/17/19 10:39 PM
@Syrina and @Judy747 thank you for sharing your experience and feelings. I cannot imagine the frustration the stares and looks can bring. I hope you find support and comfort here at Carenity by being able to communicate with others that can understand and relate.
Posted on 3/23/19 12:50 AM
Thank you all for sharing. I am so touched to hear others stories and know I am not alone.
Please stay strong everyone and if you ever need to talk reach out to me here.
Posted on 3/23/19 9:59 PM
I have cervical dystonia and it's beyond frustrating. Unfortunately, I'm also a cashier at Walmart in south Texas. So, I'm exhausted from my neck & shoulders jerking and so tired of having the elderly touch my hands while promising to pray for healing. I know they're being kind, but I've dealt with MS for over 20 years and know too well that prayers don't stop it...