Home
Forums
Dystonia Forum
Living with dystonia
I have dystonia and I struggle with the way people look at me

Back

Patients Dystonia

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

151 views
8 times supported
16 comments

Vaydeyl

03/06/2019 at 4:55 AM

Vaydeyl

Last activity on 08/13/2020 at 3:28 PM

Joined in 2019

33 comments posted | 29 in the Dystonia Forum

Rewards

Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

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,

All comments

Go to the last comment

Vaydeyl

04/18/2019 at 4:58 AM

Vaydeyl

Last activity on 08/13/2020 at 3:28 PM

Joined in 2019

33 comments posted | 29 in the Dystonia Forum

Rewards

Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@Preathutheyn069 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

Vaydeyl

04/18/2019 at 5:00 AM

Vaydeyl

Last activity on 08/13/2020 at 3:28 PM

Joined in 2019

33 comments posted | 29 in the Dystonia Forum

Rewards

Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@Hidden username 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

Dooshayng189

04/25/2019 at 3:13 AM

Good advisor

Dooshayng189

Last activity on 10/13/2019 at 5:55 AM

Joined in 2019

27 comments posted | 15 in the Dystonia Forum

Rewards

Good Advisor
Contributor
Explorer

View profileView Add a friendAdd Write

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

Unregistered member

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. 😔

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

Preathutheyn069

06/13/2019 at 7:51 PM

Preathutheyn069

Last activity on 11/12/2024 at 4:36 AM

Joined in 2019

5 comments posted | 4 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

@Vaydeyl 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

Courtney_J

Community manager

Last activity on 08/08/2022 at 11:09 AM

Joined in 2020

1,334 comments posted | 5 in the Dystonia Forum

6 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend

View profileView Add a friendAdd Write

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?
@Dooshayng189‍ @Daynaibleyl7‍ @Hidden username‍ @Hidden username‍ @Hidden username‍ @Preatrayfraychoang187‍ @Hidden username‍ @Declair‍ @Hidden username‍ @Hidden username‍ @Hidden username‍ @Hidden username‍ @075Heyveegres‍ @Blaytoneseyng600‍ @Gaikon1713‍ @Staideechastean‍ @Haiblifroun2949‍ @Hidden username‍

Feel free to share your thoughts and experiences here!

Take care,
Courtney

See the signature

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

Members are also commenting on...

Articles to discover...

07/26/2023 | Testimonial

Cervical Dystonia: “Medical profession thought I was making it all up, I couldn’t go back, so for the next 17 years I just tried to manage on my own!”

10/25/2018 | News

Half Of Women At Risk Of Dementia, Parkinson's, Stroke: Study

09/21/2018 | News

Study: Air Pollution Linked To Higher Risk Of Dementia

10/22/2026 | Testimonial

Ehlers-Danlos syndrome and cervical instability: “I’m confined to bed 24 hours a day”

10/19/2026 | News

Ozempic®, Wegovy® and Mounjaro®: differences in diabetes and weight management

10/15/2026 | News

Signs of stress and exhaustion: subtle changes your body may be showing

10/14/2026 | News

Respiratory allergies: understanding symptoms, triggers and treatments

10/14/2026 | Testimonial

“STOP, get some rest”: Goldenpalace’s story of recovery after a psychotic episode

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

All comments

Give your opinion

Members are also commenting on...

Articles to discover...