When I Think of My Family, I Often Worry

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by Emily Wallis |

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I have always struggled with anxiety. I have also always been close to my family. When my sister, Abby, was diagnosed with Sanfilippo syndrome — a terminal illness with no cure — those two things teamed up to challenge my mental health in a way I’d never experienced before.

When Abby was diagnosed, my family members processed it differently. I remember going to church with my mom that night and watching her every move. Every time her voice broke, it would break me. Then I’d think about my dad, who was at home with Abby. What was he thinking? Would he tell us if he needed to talk about it?

And finally, what was going through Abby’s brain? She has no idea why everyone is suddenly looking at her differently. Does she even know? Although overwhelmed with my own emotions, I was so worried about everyone else.

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Moving away to college (and eventually out on my own after graduating) was hard. Being so close to my family members was a big reason why, and when looking at it through the lens of Abby’s diagnosis, my anxiety comes into play.

It’s been increasingly difficult to handle that anxiety as Sanfilippo continues to take Abby away. However, I can control myself. I know when I’m having an anxiety attack. I know what to do to get past that anxiety attack. But what about my parents? What about Abby?

I worry about my sister, who is losing basic life skills and is not the Abby who grew up with me. My parents spend their evenings and weekends taking care of her and helping her do everything.

Abby’s condition is something I can’t fix. The day of Abby’s diagnosis, there was absolutely nothing I could have said to change the overwhelming emotions we were feeling. My anxiety often stems from things I cannot control. I can’t control the way this disease is affecting my family members’ lives.

Are they OK? Will I ever really be able to answer that question again?

The hardest part about this is not always knowing how my family members are doing. I constantly worry that my parents are sad or hurting. I constantly worry that Abby is in some sort of pain. I can’t control what they are feeling. Seeing your loved one hurt is indescribably painful.

Living apart from them, constantly wondering if they’re all right, hurts even more, especially when there is no way to make it OK.


Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 other 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 Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.

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