How I Respond to Pity as a Friedreich’s Ataxia Patient

How I Respond to Pity as a Friedreich’s Ataxia Patient
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The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow for my misfortunes.

Yet, as I’ve become increasingly disabled by Friedreich’s ataxia (FA) since publicly announcing my diagnosis seven years ago, I am frequently the subject of pity. It is not a word I ever dreamed would envelop my world so completely. Now that I’m more accustomed to being the subject of pity, I have developed a few observations and general principles about the act of pitying.

Pity is pretty common. When you see someone like me who uses a mobility aid and is struggling to open a door, you can respond in several ways:

  • You can help and offer a kind smile or friendly words.
  • You can help and condescendingly mention how difficult the task looks for the person you’re helping.
  • You can pretend you don’t notice.
  • You can watch them struggle and think, “That poor person. I’m glad it’s not me.”

Of these common responses, one is helpful and appreciated, while the others leave me feeling pitifully frustrated. My advice is to look for those situations where you can be helpful.

There is a difference between pity and genuine concern. When people notice my disability or hear my story, pity is an understandable reflex. FA is a “misfortune.” Yet, when people take a moment to push past that gut reaction and try to learn more so that they can better understand, relate, or help, I am genuinely thankful. I am glad to spend time educating others.

The main difference is the way people make me feel. Pity makes me feel alone, incapable, and frustrated. Genuine concern makes me feel validated, heard, seen, and encouraged.

Often, pity is unhelpful. It rarely makes the situation any better. For example, one day I was sitting with my daughter in the parents’ section at my son’s gymnastics class with my walker beside me. Another mom walked by, looked at me, pointed at my walker, and said, “You poor thing. Having that can’t be easy.” I responded as best I could, but I could tell by her tone and body language that she pitied me.

I often think about that encounter and all of the ways I wish I had responded, but mainly I wonder what she was trying to accomplish. Did she want me to respond as the bitter disabled person? Did she hope to stir up an inspiring Tiny Tim-like response? Or was I just reading too much into the comment?

I didn’t feel particularly pitiful in that situation until she made me feel disabled and sad. Until then, I felt like every other mom sitting there, watching their children.

Other times, pity is the driving force behind the assistance I genuinely need, and no matter the root cause, I appreciate the help. In a way, I depend on pity-based help for survival. Pity is often what makes people donate to find a cure for my disease or share my posts to help raise awareness. I don’t desire it, but in a way, I’m dependent upon it.

Sometimes, pity is appropriate. When I obliterated my ankle, requiring reconstructive surgery, I chose to share the news with friends and family on social media. I received an outpouring of “I am so sorry” comments. They didn’t need to be sorry, as they weren’t the reason I broke my ankle. But having people join me in my feelings about this misfortune helped ease some of the heavy burden I felt.

In that situation, pity felt validating. I also received lots of good wishes and offers of help. All of these responses were appropriate and appreciated.

All of this is to say that pity is normal. It is a human reaction that plays a vital role in the way we relate to those around us. But please be aware of how you express your pity. Take a second to put yourself in the position of the subject of your pity, and think about how you would like the pity to be received.

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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.

Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.
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Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.

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