Are you ashamed of your ataxia? Ataxia Notes #2

Are you ashamed of your ataxia? Ataxia gives a lot of reasons to be ashamed. How do you look, how do you walk, how do you talk. Ataxia is something so unusual that it is very interesting to outsiders. You can’t hide it and the worst part is – you look bad.

It’s easy to feel ashamed in such a situation. It seems best to stay home so that no one can see you. „Keep it hidden for as long as possible” – you may even think.

The problem is that because of shame, it is impossible to accept ataxia. Accepting an incurable disease is a different topic, but getting rid of shame is the first step that all of us should take. It’s hard, but it will make us feel better. Shame is blocking us. It doesn’t let us feel good about ourselves. It forces us to explain ourselves to others and makes us feel guilty for making others feel uncomfortable.

These are not good things. And I, too, felt shame at one point, and I think most people with ataxia will feel it at some point. For some, it may pass quickly because they learn not to be concerned about what others think. But others will suffer of this feeling for a long time.

It seems important to understand that it is not your fault that you are sick. You are not responsible for what happened to you. You had no choice, you were not given control. Therefore, you shouldn’t feel bad about what has happened to you. It happened and that’s it.

Imagine what it would be like to live without this shame. Would it mean letting loved ones know how it is with you? Maybe sharing your feelings? You don’t have to shout out to the world right away that you are sick. But perhaps talking to someone about just such ordinary things – like this shame – will be helpful. It will be the first step. Or admitting it to yourself. That’s a lot. Maybe some more trivial acts – wearing T-shirts, bracelets, handing out ataxia leaflets? Some people also benefit from such activities.

And if you are lucky enough not to be ashamed of your ataxia, tell us how you did it. How was it for you? Have you never felt ashamed? I will be grateful for your support.

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