It’s that time of year again.
It’s time to gather with your friends and family for the holidays and wait for the flow of uncomfortable questions to start. It seems as though nobody listens or pays attention to the seriousness of Friedreich’s ataxia and having to repeat the same thing becomes saddening and exhausting. Having to explain that you have a progressive, life-shortening illness and all the other health problems that come with it isn’t the first topic you want to discuss when seeing your loved ones but it’s an inevitable process.
They mostly have good intentions.
At the end of the day, you have to understand that it’s their lack of knowledge about FA. Your friends or family have absolutely no idea what ataxia even is, much like most patients who didn’t learn about the disease until they were diagnosed.
Majority of the time, your loved ones are just genuinely concerned and curious and it’s up to you to be their teacher. It’s a responsibility patients take on the day they find out they’re ill and sometimes it’s a difficult one to fulfill. However, patients have the possibility of teaching someone the right way to talk about FA, raising awareness about the disease in general and showing others how to politely ask about ailments in the future.
There’s one key to making it through these awkward conversations: Keep it simple.
Here’s an example of a sample conversation:
“What is the cause of FA?”
“My body doesn’t produce enough of an essential protein the human body needs to help rejuvenate and replenish my cells.”
“Oh really? What is the name of that protein?”
“Why cant they just give you a protein shake or injection of the protein and boom! Problem solved.”
“ Well, what scientists are trying to figure out is how to make the ingested protein apply to the whole body instead of just the entry site. There are many clincal trials that have been completed and ones that haven’t even started that are trying to figure it out. It’s a bit more complicated because it has to do with the coding and make-up of your DNA. I can show you more information if you’re interested?”
Approach each explanation as if you are talking to a small child. Patients are often extremely knowledgeable about the science behind the disorder or just about FA in general and tend to get lost in their responses, causing disinterest in the other person. It’s best to keep it short, to the point, add your personality into the mix and most importantly, try to keep the topic open for further discussion if desired.
There will be numerous times where you don’t want to explain it and that’s completely OK, too. It depends on how you’re feeling that day, the type of personality you have and if that conversation is really worth it at the time. That’s your decision to make and you have every right to say what you want.
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.