How I’m setting personal boundaries this holiday season

Identifying my needs and embracing my limitations are key

Elizabeth Hamilton avatar

by Elizabeth Hamilton |

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Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life upside down. Who’s excited?

I hardly remember my parenting days before FA arrived on the scene for our daughter Amelia, age 11. Now it’s woven into our daily lives, and some days I just want a break.

FA has its fingers spread into every area of our lives. It has dug into mobility, grabbed at independence, poked at how we think about the future, and even pried into the sacred space of sleep. It’s no wonder that some well-intentioned conversations leave me depleted. I become envious of the parents who wring their hands over the cost of sporting gear or are overwhelmed with schedules for their children’s discretionary activities.

FA is not elective. In the face of it being our reality, however, we can think about building fences around our well-being. And contrary to what we think sometimes, boundaries are healthy!

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Navigating the Holidays with Friedreich’s Ataxia

Building safeguards into conversations

No one else knows what is going on in my mind. I’m the only one who can identify my needs. Grounding myself and getting a clear understanding of where I am is step one in engaging in any emotionally challenging situations.

What do I need?

Nonviolent communication, coined by Marshall B. Rosenberg, PhD, supports an incredible list of potential needs. Surprisingly, I frequently long for the same things: shared reality, to understand and be understood, connection, balance, ease and comfort, and power in my world.

When I know what I’m longing for, I can ask for help in having that need met or think through my line in the sand. That’s my second step. When my need for ease and comfort is present, it’s important to know that I might not be looking to talk about FA with a family member I haven’t seen in a while. But because connection is also something I desire, I can think through my potential response if the conversation moves in that direction, so that this need is met, as well.

That response might be something like “I appreciate you checking in and wanting to know more. It can be overwhelming, but I’m grateful to be here with everyone today. So how have things been for you?” Or “Thanks for asking. It gets to be a lot, but we have hope.” And then I can change the subject. Shifting the conversation to another topic works like magic sometimes.

I remind myself often that I don’t have to talk about things I don’t want to discuss.

Holding space for grace

During the upcoming holidays, I’m going to work to embrace my limitations as both a person and a parent while providing myself with an abundance of kindness. Then I hope to reflect that back to others.

My needs matter; my limitations are real. Embracing them doesn’t make me weak; it makes me human.

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.


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