I have dystonia and I struggle with the way people look at me

Hi Everyone, 

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. 

LHH

@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? 

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.

@Dyston!a‍ 

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.

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!

The whole thing just sucks..the twitching, the hurting all the time.. and when I’m nervous or mad it gets worse.

@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.

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.

 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...

I have spasmatic cervical dystonia also and have found that using CBD oil helps my spasms tremendously and my anxiety with the feeling of people staring at me- I use to feel like everyone was staring at me so I wouldn’t go to certain events. I’ve realized over time that I stress myself out at these events or outings by thinking everyone is staring at me but really they aren’t, maybe some are, but it’s like a cold sore on ur lip-u feel everyone is looking at it,if that makes sense. I’ve learned not to put myself in stressful situations and to keep negativity away- this def helps. Stress definitely makes everything worse. I go to acupuncture every week also for my jaw and neck and I sleep with a mouth guard for TMJ from the dystonia pain and it helps a lot! I also got to PT for cranial sacral therapy which is amazing!!! I have contemplated the Botox but am so afraid to get it! I have dysphagia in my throat already so I’m leary to try it. My pain is like a 5 everyday with some flare ups and some good days. You kind of get used to it I fell for me anyway. I don’t know my progression (has been 2 years thus far) but I’m hoping isn’t much more than it is now. I turn to the right - I stay positive and for neck exercises and try to constantly fight it . I made the decision that I won’t let it beat me..