My name is Cara. I am 30 years old and have ankylosing spondylitis. It has changed me. Life will never be the same. For a moment every morning as I wake up I fear moving because I am not sure what hurts yet and how bad it will hurt. I am so tired all the time that most of the things I want to do I miss out on, putting my job before my life. My future is a giant scary question mark. There is no way to know what will happen. The only guarantee is pain. It is the most devastating feeling. I can’t even be sure that I will always have a plave to live. When you can’t be sure that you can work, you can’t be sure you have a future. And with all those overwhelming aspects of AS, from money to meds to disability to pain, the aspects of “normal” life are still there. Wanting to meet someone. Will they think I’m pretty? Will they want to go on another date? Will they kiss me? Will they leave because of my disease? Wanting to make more money. What kind of job do I want to do? Can I work more hours? Is there room for advancement? A retirement plan? Will I get along with my coworkers? Can my body take it? Playing with my nieces. Can I make them smile? How was school? Do you know how smart/amazing/beautiful/talented/loved you are? Can I handle picking you up or will I be in pain for days because I did? Spending time with friends. What activities are there in my area? How far are we willing to travel for other activities? What can we afford? What movies are out? Do my friends know how much they mean to me? What am I gonna wear? Will I have to cancel at the last minute or leave early because my body gives out? We are people that have a disease. We miss all the things that we can’t be a part of. No one would choose this.
Iowa, United States of America