Tuesday, October 5, 2010

Ali



















Name: Ali
Location: New York, NY
Age: 26
Diagnosed with Ankylosing Spondylitis at age 18
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How has your condition impacted you?  I would like to say not at all, but as time goes by, I'm realizing that that might be a bit more of a lie than I've let myself believe. Being diagnosed at a younger age, and having misdiagnosis after misdiagnosis since I was thirteen, AS became a part of me that I simply dealt with; it was, and continues to be, a part of my everyday life. In a way I'm glad that there was a four year period of trying different medications, having allergic reactions to other medications, and dealing with seemingly endless questions from middle school and early high school friends. In retrospect, this helped me appreciate a concrete diagnosis that much more. It built character, I wrote my college essay on the challenges I faced, and it helped solidify a strong appreciation for the little things in life. Learning to approach any situation by looking for a silver lining, no matter what has occured, has helped put a lot of things into perspective.


What would you like for other people to know about your condition?  It's okay to ask questions, and I'd actually prefer it if you did. Going back to the diagnosis phase, things get a little hazy, but that entire period is so crucial to really understanding AS, that it might take a question or two to show me that you care to know and will try to understand - it's a common misconception that arthritis is only something that your grandparents can get. Please understand that I might look perfectly fine, but I might be incredibly fatigued. Or achy - especially when it's rainy out. However, I also hate to complain, so offering to carry something up the stairs, offering me a couch instead of the floor if I'm staying over your house, or hanging back with me when I walk just a bit slower after leaving the movies, is appreciated more than you know.

What would you like to tell someone who was recently diagnosed with your condition? First and foremost, yay! You're not in the dark anymore, and that's half the battle. Secondly, don't get discouraged. Although it might be hard to not beat yourself up over the ups and downs (it took going through an entire category of medications, endless rounds of physical therapy, multiple casts, different specialists, and finding a drug that wasn't even FDA approved back in 2003, for me to find something that gave me relief and stopped the progression of things), do the best that you can do, and give yourself a break. After you have a chance to process, well - everything - decide how you're going to treat this new aspect to your life. You don't have to suffer alone, and it's okay to ask for help. It also doesn't have to be a constant demon, as you'll get to know your body and yourself in a much deeper way than most people. Take advantage of this, as it will help you appreciate similar qualities in others - although you might not want to share things at first. I'm still coming to terms with openly talking about everything, but I'm also learning that that's okay. You'll come to notice who really sticks around, and who offers to carry that extra heavy bag. Or maybe, someday you'll be able to carry that heavy bag yourself, and these little things are the things that matter. :) 

Thank you so much Ali!

3 comments:

Minty said...

So eloquent. And yay for her positivity!

Cathy said...

"It also doesn't have to be a constant demon, as you'll get to know your body and yourself in a much deeper way than most people."

This is so true! This is one of the amazing side effects that come from having a disease.

Maya said...

Ali's answers incredible and she's one of the cutest girls ever. Such a fantastic portrait! Thanks for introducing her to us, Jodi - we're already in touch :)

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