I’ve known for a long time that I have anxiety. For obvious reasons, it hit an all-time high when my mom was diagnosed with cancer and my sister with Sanfilippo syndrome, which is terminal and has no cure.
From that point on, I constantly worried about the future. Every holiday became bittersweet with the knowledge that our family might not be complete at the next one. My mindset and life turned upside down.
This is a very raw column for me. I recently accepted that I need professional help for my anxiety, which was a difficult realization. It’s important to write about it here because many Sanfilippo siblings are younger and may go through this later in their lives. I have a unique and rewarding position with this column, given that there are not many resources for Sanfilippo siblings out there.
Thinking about the future and being anxious can be extremely isolating. I’ve previously discussed how incredible my friends are, but this is another example of something that is difficult to talk about with people on the outside. Most people have experienced anxiety about a loved one passing, and when the thought of death is constantly dangled in front of you due to a diagnosis like Sanfilippo syndrome, it’s hard to set aside.
I like to please people, especially those I love. But with anxiety, it’s a difficult trait to have. For example, I asked my parents last week if I could keep my sister, Abby, for a night in my new place. I was excited to spend time with her and help my parents for a night.
But that night, I was haunted by anxiety. As I put my sister to bed, she wouldn’t go to sleep, which got the best of me. I grew frustrated with myself because I felt inadequate. I thought that if I couldn’t take care of my sister for one night, what would happen when I’m her caregiver one day?
Thoughts of the future should be exciting. But I often feel angry or upset that my future holds pain, loss, and grief. I try to balance things by telling myself that my future will have happy offerings, too, such as starting a career, getting married, and having children. But with my anxiety, negative thoughts bleed into any glimmer of positivity.
It’s important to check in with yourself. This was a difficult column to write because I am vulnerable. But I know how important it is to be reminded to check in. I wasn’t doing this and had pushed away my feelings of anxiety, allowing them to grow.
Families of terminally ill individuals are especially guilty of this. There is no pause button for Abby’s needs, and it’s easy to ignore personal struggles for her sake. This past week was a brutal reminder that my mental health is important, and it affects every aspect of my life.
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 Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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