You know that feeling when you’re at a store and the cashier gives your change back and a couple of people are behind you? It seems like you can’t put away your change fast enough. Imagine that feeling for hours. That is like the anxiety I feel when eating out in public. Having an invisible disease is so frustrating at times like these, because it leaves room for questions and assumptions by others and you always assume the worst.
Of course, when I walk anywhere, it is apparent I have something wrong and I need help. But let’s say I go into a restaurant and the waiter doesn’t see me walk in. I look like a normal 25-year-old sitting at the table. If I am with family or friends, I usually hang onto them and use my cane, which I can fold up and put under my chair or table. Because I am still in the early stages of progression, my speech isn’t as affected yet, my arm coordination is slow but controlled, and you can tell that I work out (I think). So, when the waiter looks at me funny because I tell him I won’t be able to pass the plates of food he brought for my table or when I say I can’t give him the glass in front of me because of spilling, that’s when I get the weird looks and questioned about my sobriety.
Imagine ordering an alcoholic beverage now? Ha! Or when I ask for a spoon instead of a fork or a bowl instead of a plate. The waiters can’t see that I am unable to cut the meat I might have ordered, so I give it to whoever is with me. Or how spoons are the only way I can feed myself effectively. Or that I’ll end up with my food all over the table if I have a flat plate. I try to do things that won’t potentially bring more attention to my group, which can be difficult, because I have blue hair. I always think every person is watching my movements, even though no one is and no one cares. But that’s part of the anxiety that comes along. No matter how much I convince myself that no one is really looking, I still think in the back of my mind that everyone in the restaurant can see me with a spotlight.
A few of my FA friends have told me multiple stories about their experiences with eating out and how they try to avoid it all together. People stare, laugh, mock or tease them because of how they eat or simply because the entire process of swallowing food becomes increasingly difficult, sometimes causing choking spasms. How disheartening is that? A family would rather order in or eat at home because of other people’s reactions. Going out to eat with family and friends is supposed to be not only a good time, but also necessary sometimes. A lot of FA patients don’t leave their houses often, so going to a local restaurant shouldn’t be such a hassle and dreaded experience.
But, speaking from my stage of progression, I’m noticing that it’s getting more and more difficult to handle small things at the table. Passing the water or salt and pepper without dropping it. Sitting in a booth and awkwardly scooting down the leather seats. Being asked to pass the napkins and knocking down everyone’s water on the way. I am choosing delivery over going out because it really is easier.
I can see how the combinations of different struggles may contribute to the decision of preferring to stay in. It is sad, and I wish this anxiety could just go away. But I know it won’t, and it’s only going to get worse.
Note: Friedreich’s Ataxia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.