Why my life needs trigger warnings, and maybe yours does, too

My 11-year-old daughter, Amelia, has Friedreich’s ataxia (FA), and the impact it’s had on her body and our lives has its own gravitational pull. As is the case for most people managing a chronic disease in their family, FA is always present, even when it’s not the conversational centerpiece.

When spending time with people unaffected by chronic illness, I’m amazed at how different their lives are from ours. When it comes to how they spend their time, money, and energy, I just cannot relate. This dissonance can lead to feelings of loneliness, loss, resentment, or, sometimes, a reminder of how incredible the members of our FA community are for managing all that they do.

It can also be triggering. This disease takes so much in every way imaginable. If you find yourself on edge, you’re not alone.

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Pace yourself

One of my professional mentors also parented a child with a rare disease, and one of the best pieces of advice she gave me is to pace myself. Those two words speak volumes in a life that is a marathon, not a sprint.

While on the journey for treatments, we need to live our best lives while also fighting insurance companies, making our homes accessible, juggling doctor appointments, or debating educational accommodations. Burnout is not an option, so we need to be strategic with how we spend our energy.

Amelia’s disease is progressing before my eyes, causing me to feel a sense of urgency. As activities of daily living are affected by her lack of balance and simple routines have become complicated, my energy and time are stretched thin. I feel a tension between what I can do and what I want to do.

Despite that tension, I’m spending my spare time reading about FA and talking to other parents so I’m not missing anything. Part of that is my need to know I’m doing all I can, and the other part is my desperate love for my children. I don’t pace myself well with all that, and it has consequences.

The crazy thing is that I know better.

Taking breaks is OK

As a social worker, I’ve sat in so many trainings that began with a self-care disclaimer — reminders from the facilitators to pay attention to any triggers in the material, to listen to our bodies if we’re struggling to stay calm (if there’s an increase in our heart rate or breathing, tightness in the chest, or other signs of stress). If so, we were told to respond and attend to our needs.

I’ve also created these types of disclaimers and delivered them to large audiences. I then turned on my heel and walked straight into my personal life with no such attention paid to how I was personally doing.

I think we need a disclaimer stamped all over as we navigate FA, and, personally, I need it in bold and all caps. I must continue to recalibrate my mindset to take better care of myself and set boundaries when needed.

If you love someone with FA, please pay attention to yourself. As science advances, we’re going to see more and more articles and studies that will provide critical information. Some of it could be triggering or otherwise emotionally challenging.

You’ll want to think about what information is important and helpful for you to know, and when you need to know it. When you’re not in a space to talk about FA, give yourself a break. I have stretches when I take a sabbatical from FA communications. It’s been important — critical, even — to my mental health. It also reminds me that FA is part of my life, but it doesn’t define who I am or who my family is.

There will be days when, like me, you’ll have the energy to read more, talk more, invest more. And on those days, bring it.

Do you feel triggers when you’re absorbing information about FA? Please let me know about them in the comments below, and remember that if you’re struggling with your emotional well-being, help is available by calling 988 or checking https://www.samhsa.gov/find-help/988 to find assistance near you.

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.