Why I’m not afraid of awkward conversations anymore
Speaking the truth about our family's journey with FA is vital
I saw the smile on the face before me tighten as the words from my mouth registered. I needed to duck out of the gathering early to go home and care for my 11-year-old daughter, Amelia, who has Friedreich’s ataxia (FA). My family was having an “FA is getting me down” kind of day.
I quickly explained why I was leaving to my compassionate host. I used language that normalized my family’s everyday journey with FA while speaking with someone who found the information to be shocking. As we stood there, in the valley of discomfort, I could see her mind turning, searching for the right words.
Welp, I had done it again. I’d brought a causal conversation to a grinding halt because I’ve lost the ability to sugarcoat things and pretend that my life is different than it is.
“I have a phone call here for Abby? Is anyone here called Abby Normal?”
I often feel like I don’t belong these days. Life took an abrupt turn when FA entered the picture. Things that used to be important are less so now, and what used to be normal no longer conforms to our daily lives.
In most group conversations, I feel incredibly out of place. Statements by well-meaning people that life will get easier as Amelia ages don’t reflect that simple tasks like brushing her teeth are complicated for my 11-year-old. Discussions about things we do in our free time serve as a reminder that this concept doesn’t exist in my home.
In the past, I’d hide my truth, hold my tongue, and remain inauthentic in the moment to prevent others from feeling uncomfortable. But perhaps discomfort is what the world needs.
About 350 million people around the world have a rare disease, many of them children. Furthermore, an estimated 95% of rare diseases don’t have a treatment approved here in the U.S. by the Food and Drug Administration. In my family’s case, a treatment has been developed — Skyclarys (omaveloxolone) — but Amelia can’t access it because of her age (Skyclarys is approved in the U.S. for patients 16 and older) and a dearth of pediatric clinical trials. No one should be comfortable with this.
But unless we share our experiences and emphasize our needs, moving the needle will be hard. This fact — and, frankly, fatigue — brought me out of hiding.
Owning my responsibility
I must confess: I’m a people pleaser. I like to foster understanding and connections without making others feel awkward. But that’s exactly what speaking honestly about my life will do. An important point I need to remember is that what I bring into this world is my responsibility, while the way that others respond to it is theirs.
So I will honor my truth by sharing it when I have the energy and capacity. That might mean that I’ll occasionally find myself in the valley of discomfort, and that’s OK.
Next week, on Jan. 25, the Friedreich’s Ataxia Research Alliance will host a webinar on pediatric research initiatives that I encourage anyone who is interested to attend. Even if your child has been diagnosed with a different disease, understanding the need for advocacy can be helpful. See you there!
Note: 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. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.