I’ve Learned to Speak Kindly to Myself When Shame Sneaks In

Hello, friends! I hope you are enjoying some fresh spring air and the sun is shining down on you. Even if it’s dark and rainy, you are worthy of all the beautiful things, and I am so happy to welcome you back.

My son Noah was diagnosed a few years ago with Friedreich’s ataxia (FA). I had searched his individual symptoms for years, yet somehow never came across the diagnosis until that dreaded day in January 2018 when the neurologist showed it to me.

Once Noah’s diagnosis was confirmed, my husband and I researched it and learned that FA is a recessive genetic disorder. Because we are both carriers of the defective gene, Noah inherited it from both of us, causing FA — a one in four chance.

When I discovered that I had passed along this horrible disease to my son, I felt so much shame. If only I had known! But would my husband and I have done anything differently?

Questions like these are such a slippery slope, with all of the “what ifs” and “should haves” that they entail. Thankfully, after I wrestled alone for a while, I reached out to a counselor who is trained to deal with hard questions.

The advice she gave me wasn’t complicated, yet it was profound: “Speak to yourself the way that you would speak to a friend.” Would I ever consider shaming a friend for passing along a gene to her child that caused him to develop a neuromuscular disorder? Of course not!

Psychologist Krystine Batcho, PhD, addresses this apparently common question, saying, “Shaming someone for what they cannot change places them in an impossible situation that can yield nothing beneficial.” Sometimes I need that reminder: Nothing good can come from shaming myself for something I cannot change or control.

So, if you struggle with shame like I have, following is some truth from one of my favorite poets, Morgan Harper Nichols: “Let today be the day you are kind to yourself and focus on believing what is beautiful and true. And this does not mean you ignore your imperfections. It means, in spite of them, you believe there is beauty to you.”

We are all made up of more than our physical bodies; we are body and soul. While I truly wish my son hadn’t inherited my flawed genes, I know I have nonphysical traits that are valuable and beautiful — my love, tenacity, and hope for the future, to name a few. These are things I can be proud of passing on to all my children. We all have many traits that we can proudly leave as a legacy.

Life can still be beautiful even though it is hard. When shame starts to sneak in, name it, and then let it go. My friend, you are amazing and worthy of all the kindness in this world!

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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.