Your Stories: Parenting a Teen With AS

It is often said that a parent is only as happy as their unhappiest child.

When my son was diagnosed with Ankylosing Spondylitis at 18 in January 2024, a difficult and deeply emotional journey began, for him, and in a different way, for me as his mom.

I have watched him struggle through pain that no young person should have to face, missing exams, stepping back from social life, and doing his best to find moments of normality in a body that does not cooperate. There are days when I stand on the sidelines feeling helpless, unsure how to reach him or ease what he’s carrying. The fear, worry, and sadness feel overwhelming.

What makes it harder is how invisible this illness can be to others. Friends and family don’t always understand, and sometimes well-meaning people offer a kind of positivity that doesn’t match our reality. Meanwhile, I’ve taken on a second job to help cover his medical costs, because AS still isn’t recognised by medical aids in South Africa.

Yet every day, we keep going. I try to meet each challenge with strength, to look for the small “can-do’s,” and to remind him and myself that there is hope… there is always hope.

This National Family Caregivers Month, we thank Sandy and her son for sharing their story, and we celebrate caregivers year-round. Share your story anytime at programs@spondylitis.org.