Identifying and addressing your own needs is vital in life with FA

Being able to recognize your needs is a big sign of maturity.

As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when something is “off” in their body. The Gottman Institute explains that anger is a secondary emotion, meaning it’s usually caused by other feelings like fear or sadness. But anger is like the tip of an iceberg; we often don’t see the primary emotions that remain under the surface.

For example, children frequently become “hangry” — when they’re so hungry they grow angry. But young kids may not know how to voice these feelings, so parents quickly become adept at recognizing the signs and determining the underlying cause of their child’s anger.

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As children mature, they learn to recognize and communicate their own emotions and needs. The next step is to find ways to address the cause of their negative feelings.

If my daughter, for instance, is reacting emotionally to everything my son says, I’ll gently send her to snuggle in bed or on the couch with a book and a big cup of water. Alone time is a good regulator for her. My son, on the other hand, usually needs a snack and physical activity, so if he’s upset, I’ll send him to do 10 flips on the trampoline, hit a bucket of balls in the batting cage, or shoot 10 baskets in a row on the driveway while I make him a snack.

I hope that, eventually, my children will learn to self-regulate and won’t need me to intervene and advocate for their needs as much, but I’m happy to help while they’re still so young. As a bonus, helping them identify and address their needs allows me to sharpen those skills in myself.

Identifying my own needs

As my Friedreich’s ataxia (FA) progresses and both new and existing symptoms erode my abilities further, I require additional adaptations. For example, as my balance worsened, I found myself holding on to ledges, counters, friends, and objects like strollers more often. I obviously had a need, so I accommodated it by getting a walker. And when the walker alone no longer met my needs, I acquired an arsenal of wheelchairs.

In addition, my feet and legs were cramping at night, and my nerves were painfully seizing, preventing me from getting the sleep I desperately needed. As a result, I began getting regular adjustments from a chiropractor and applying magnesium oil to my feet every night.

I’m not always perfect at identifying and addressing my needs as a mom, wife, friend, and FA patient, but I strive to improve daily.

I know I have more physical needs than most because of my FA, which means I have to be more intentional with my actions and reactions. It isn’t easy, and it involves a lot of trial and error, adjustments, adaptations, research, self-advocacy, and self-evaluation. But living a healthier, happier, safer, and more comfortable life enables me to be the best version of myself for those around me, so the effort is worth it.

“My dear brothers and sisters, always be more willing to listen than to speak. Keep control of your anger. Anger does not help you live the way God wants.” — James 1:19-20 (Easy-to-Read Version)

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.