Young and Disabled

I first began showing symptoms of Ankylosing Spondylitis when I was 16 years old. I was officially diagnosed with AS three years later. While the diagnosis offered relief, it started me on a journey of endless doctor's appointments and different treatment regimens. I have tried NSAIDs, biologics, and a mix of the two.

I am now 21 years old and my condition has worsened. All my joints are constantly inflamed, and it hurts to know that my best hope is to reduce symptoms and slow the progression of my disease. I feel like I was robbed of my life. I see peers making the most of their lives and having fun, while most of my world is limited to the confines of my home. I have limited energy and am often in too much pain to complete my activities of daily living, let alone going out and having fun. I often need family members to help me take care of myself. They help me shower, they drive me around, they make my food, and so on. It hurts to have aging parents help me, even though they could use the extra rest and support from their child. I know it is not my fault that I am disabled, but I wish it would not affect those around me, those I care about most. That's the worst part of being disabled; having others be affected by my disability.

It is a challenge to be a young and disabled person. People often do not believe me to be sick, they tell me I'm too young to be disabled or that it is all in my head. Hearing things like this can really eat away at a person. However, I am trying to make the best of my life and my abilities. I am currently doing my undergrad and while school is difficult due to my debilitating disease and the pandemic, I am excited to accomplish this. Being young and disabled does not mean life is over, it just means that life looks a bit different and that's okay.