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

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Dyston!a

03/06/2019 at 4:55 AM

Hi everyone,

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,

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Dyston!a

04/18/2019 at 4:58 AM

@Jdsbruce I understand that feeling. It is hard because like you said - people mean well, but when I wake up - I am still waking with the same condition, same symptoms, same pain.

How is having Cervical dystonia and MS? Does MS complicate things?

I have dystonia and I struggle with the way people look at me https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817 2019-04-18 04:58:33

Dyston!a

04/18/2019 at 5:00 AM

@Foxyfoxm Thank you for sharing. I think I wrote you in the other forum about your acupuncture. That is great the CBD helps with your anxiety. I know people say that I am feeling the stares, but most people are not really staring, but I don't know - I argue differently - I have actually seen people just stand there and stare and it drives me crazy, but I should not let it get to me.

I have dystonia and I struggle with the way people look at me https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817 2019-04-18 05:00:51

mvmentme

04/25/2019 at 3:13 AM

Good advisor

Staring is inevitable and we can't change the stares we received. Try not to focus on it.

I have dystonia and I struggle with the way people look at me https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817 2019-04-25 03:13:57

Raine061

05/27/2019 at 6:08 PM

Yep, get stares. The worst are on job interviews even when I explain I have neck spasms. It's so freaking frustrating. 😔

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Raine

I have dystonia and I struggle with the way people look at me https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817 2019-05-27 18:08:13

Jdsbruce

06/13/2019 at 7:51 PM

@Dyston!a yes, MS complicates life in general. I'm on max oral dose of Baclofen, take 800mg Neurontin 4 x a day, take 100mg Provigil 2x a day to make it through work. I've got nothing left by time I get home...I'm just exhausted.

I have dystonia and I struggle with the way people look at me https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817 2019-06-13 19:51:32

Courtney_J

Community manager

08/13/2020 at 4:59 PM

Good advisor

Hello everyone,

How are you doing? Have you seen this discussion? emoticon cute

Have you noticed how others react to your dystonia? Does it bother you? How do you handle it? Do you think there is enough education out there on dystonia and its symptoms?
@mvmentme‍ @SFoster‍ @tammysue2015‍ @BeckyS‍ @mamawho‍ @Tamiam‍ @maritootles‍ @Janine‍ @Tussie56‍ @JudyMcVay‍ @izisjewels‍ @donhop‍ @Powens‍ @Sunbeam‍ @madalena‍ @Jaytwothree‍ @betsyns‍ @Buggsme‍

Feel free to share your thoughts and experiences here!

Take care,
Courtney

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Courtney_J, Community Manager, Carenity US

I have dystonia and I struggle with the way people look at me https://www.carenity.us/forum/dystonia/living-with-focal-dystonia/i-have-cervical-dystonia-and-suffer-from-the-s-817 2020-08-13 16:59:40