3 Tips for Explaining Your Disease
In today’s world, it’s become a trend to share every detail of your life — people always want to hear your story. No matter who you are, people are more curious than ever and like to engage in more meaningful conversations. Maybe it has to do with the popularity and normalcy of social media or being out in public and constantly engaging with others. It’s great to see people having deeper connections and it’s refreshing that others genuinely want to know about others. But, it can become tricky telling your story when having Friedreich’s ataxia, which can affect your speaking and hearing abilities.
Here are some tips that can help you prepare for the inevitable questions:
Have your main elevator pitch
Going to a restaurant or bar is not really the ideal place to have that conversation. Depending how packed it is, how loud the music may be, how dim the lights are and the length of the tables, these factors can influence the discussion. But it can help if you have a memorized and practiced spiel to give those who are curious. If they want to know more details, most likely they will keep asking you other questions and you can choose if you want to engage or not. But if you have a short simple explanation ready to go, it can make things a little easier to get through.
Don’t be afraid to explain
Depending on your willingness to engage with others, speaking ability and if you even want to socialize, don’t hesitate to let others know that you struggle with hearing and speaking. The typical person has no idea what the details of FA are so it becomes your responsibility to let them know. Tell them they will have to listen closely, you might mispronounce words or it may take you a little longer to spit your words out. If you let them know ahead of time, it may make them more comfortable in the conversation itself with that heads-up and they can have the patience you need to talk to them.
Don’t get mad, educate
Often, you come across people who don’t seem to know the rules of common courtesy and manners when they ask you questions. “What’s wrong with you?” is the all-time favorite and most common question a lot of patients get. It’s definitely frustrating and often disheartening and it can cause you to shut down. But, take it as an opportunity to educate them on the proper way to ask so they know in the future. Plus, it gives you an opportunity to nicely put someone in their place (which is always a good feeling after being caught off guard with their rude question). “Well, typically other people ask about what my ailment is or if my mobile device is temporary or permanent, but…” Then go into that elevator pitch you have stored in the back of your brain.
At the end of the day, it’s up to you whether or not you want to participate in these conversations. You shouldn’t be afraid to let others know what’s really going on with you. There is absolutely no way you should ever feel embarrassed or out of place for having an illness you had no control over. Remember, it’s your life and your story, so tell it however you want to.
Friedreich’s Ataxia News 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 another 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.