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17 Things People Who Live With Dystonia Wish Others Understood

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Dystonia is a condition characterized by persistent or intermittent muscle contractions causing abnormal movements or postures. Multiple forms of dystonia exist, and dozens of diseases and conditions may include dystonia as a symptom. It’s a complex condition with no cure or known cause, but it affects around 300,000 people in the United States and Canada.

The Mighty recently teamed up with the Dystonia Medical Research Foundation and a blog called “Raising Dystonia” to ask people who live with this condition, or have loved ones who do, what they wish the world could understand about it.

This is what they had to say:

1. “I wish people wouldn’t mistake my dystonia for me.” — Whitney Jory

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2. “It’s OK if you don’t understand. Just please be understanding that I have challenges that may require your patience and empathy.” — Tom Seaman

3. “Living with dystonia is so much more than the physical pain — which is constant and excruciating. It’s knowing that an attack is on its way but you don’t know its arrival time, only that it will arrive pretty soon. It’s forgetting the names of inanimate objects, your favorite TV show and your friends’ names. It’s being unable to communicate because of word confusion, [and] the inability to articulate, which makes you feel stupid and [feel] that everyone is tired of listening to you struggle to elucidate your thoughts and opinions.” — Bob Cook

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4. “No one knows what causes it, and there is no cure for it.” — Rita Barberousse

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5. “Having dystonia, especially on a bad day, can make everything, every action, into something to overcome.” — Amy Patricia Smith

6. “I wish people would understand that it doesn’t get better. I get tired of hearing, ‘Oh, you’ll feel better soon.’” — Colleen Thomas

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7. “I wish people knew how hard I have to work at being nice. I’m in so much pain and it’s so easy to be b*tchy. I don’t want to be that person, so I work hard at staying in a good head space. I try to be friendly. Some days I stay at home because I know I can’t take interacting with others.” — Whitney Jory

8. “Because I can do something one day and not the next doesn’t mean I am not in daily pain. Many times I do things that are extremely painful but I smile while doing them because I have four young kids who are watching my every move and I don’t want them to remember me being in constant pain.” — Cindy Harris Bratkowski

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9. The memory loss and confusion are very real.” — Koko Hisamoto

10. “Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.” — Kylie McPherson

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11. “Every day is a challenge. We may look good on the outside but we endure a lot of pain and suffering to do any and all things people take for granted.” — Anastasia Hojo

12. “It isn’t that we don’t want to participate or commit, but we have to see how we feel that day. It takes a tremendous amount of effort, hard work and a great support system to live as close to normal life as possible.” — Adrianna Euliss Barlow

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13. “Just because you can’t always see it, doesn’t mean it isn’t there.” — Amber Fisher

14. “Just because I have to do things differently doesn’t mean I can’t do them. Having dystonia doesn’t rid you of the need for independence. It may be painful and frustrating, but I can run with a limp and pick up boxes with my fist with the best of them!” — Meghan Lynn B

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15. “I wish people would ask me about my dystonia.” — Mary Sue Dobbins

16. “I suffer on a daily basis. Just trying to hide it from people is exhausting… I do my best to live with this disease because I have no choice — it’s the cards I was dealt.” — Karan Thomas

17. “Although it is a daily challenge to live with a rare form (respiratory) of a rare disorder (adult onset generalized dystonia), it’s still possible to be a blessing and an encouragement to others. There is beauty everywhere around us, if we will take the time to look for it.” — Ramona Edwards

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 *Some answers have been edited and shortened

Originally published: September 14, 2015
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