As I was designing Ali's spotlight, my biggest struggle was finding page dividers that were bright enough. Quite simply, Ali is a ray of sunshine and, although we've only hung out a few times, her presence just makes me feel good. I've loved sharing stories with her and, better yet, laughing about the inherent absurdity of chronic illness. She's just one of those people I "click" with - something I predicted when I first saw Ali on Jodi McKee's portrait project.
Ali works at SeamlessWeb.com, a well-known food ordering web site. As she puts it, "I studied computer science/IT stuff in college and after getting a BS in Digital Media and doing lots of photography/studio art work, decided that I was going to pursue my MFA in Design at BU to explore the more artsy side of things - which everyone can see here: http://www.ahasdesign.com." Ali's attitude is something that I love being around and, even though she has endured so much, she maintains a positive attitude about it all. I've learned to laugh about my struggles with her; to focus less on what I can't do, and more on what I can. For instance, Ali takes gorgeous photographs and has even started something called her "365 Project" with the goal of snapping a photo a day for one whole year. Click here to see several other collections. She sees the world in a beautiful way and I can't help but think this is somewhat impacted by her illness. She's been forced to slow down since her diagnosis and, while that can be frustrating at times, I also think she also notices more of her surroundings that others may miss. So now, allow me to introduce Miss Ali...
I was officially diagnosed with Ankylosing Spondylitis in 2003. However, this stemmed from endless misdiagnoses that started after a gymnastics injury the summer between 7th and 8th grade in 1998, and turns out relates to issues that were present since birth. I was 13 in 1998, and was just about to be 19 and head to college when I was actually diagnosed.
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
Autoimmune things in general are so finicky to diagnose, and AS is no exception, but I would first tell them to be really happy that they're on the road to treatment. Getting a concrete diagnosis was half of my battle, and although I did have to take time to be 'okay' with the reality of what was going on, the prospect of an actual diagnosis, with actual medications that had the potential to work, was incredibly exciting. To this point, try not to get discouraged if it takes a while to find a medication (or doctor, even) that works. It took a couple of years, a really bad allergic reaction, some crazy doctors, and lots of frustration for me to find something that worked.
As far as chronic illnesses in general go, I'm still dealing with what mine has to throw at me, so the best advice I can give would be to take it one day at a time. Enjoy the little things, listen to your body, don't take anything for granted, and don't ever (ever) give up. Even though I was considerably young when everything first started, I look back now and realize that I actually did know what I was talking about and telling doctors. Chronic illnesses are tough enough to deal with, and if you can find the strength, please remember to just trust yourself - go with your gut.
Please explain a bit how your condition affects you.
Oh goodness, this is a tough one. I hate to say things like this, but as I'm getting older, I'm realizing that AS might effect me more than I'd like to admit. Symptoms range from fatigue, stiffness, and joint pain, to strange muscle spasms, weird digestive issues, and a newly diagnosed case of psoriasis. The hardest to cope with is probably the pain and fatigue, as it's so much more than "just being tired". I'm not one for taking a breather, and I still grapple with the fact that I need to slow down; this is also probably the most apparent element that has changed with time. Coming to terms with the fact that I don't have to (and probably shouldn't) constantly push myself and that it really is okay to ask for help has been, and I think will continue to be, something that I have to work on.
On an emotional level, dealing with AS has been one huge roller coaster. There are the good days when you marvel at feeling well and then there are those days when you want to sleep for hours after just sleeping through the night or walking to work. The latter gets frustrating, but helps you appreciate the former so, so much.
Where do you get your strength?
These just keep getting harder and harder! :] But ok. Honestly, this is a tough one because I really am not quite sure. When I was first diagnosed, my parents weren't very understanding of the "invisibility" of the pain that was going on, and even now, don't quite "get" things; they chalked it up to me being an angsty teenager looking for attention. It's hard dealing with that, and there's nothing easy about it, but I've always kept a journal and have always played the piano - two things have been incredibly therapeutic and helped me be 'okay' with everything.
I'm also one of those people that got ridiculously lucky with the friends in my life. They know that understanding completely is something they're not able to do, but admit this, which makes their current understanding that much more genuine. They let me rest, understand if I need to take a breather, offer me the couch instead of the floor if I'm spending the night, and don't discount my fatigue as 'laziness'. Over the years, friends going back all the way to elementary school are still in my life, and I couldn't be luckier; they help me remember that my condition doesn't define me, and that I get to define *it*.
In addition, I've come to realize that sharing my story is a great thing, and the people you meet in doing this are even better. There are people who understand, who can make you feel less 'alone', and who can relate. I do think Plato's quote "Be kind, for everyone's fighting a tough battle" encompasses things pretty well - there are others who are experiencing things we can't even begin to imagine and everything can always be worse.
What are you most proud of?
I think I'm the most proud of the fact that I haven't let AS get in my way. When I was a junior in college, I studied abroad in Italy. Despite the fact that I could only bring so much medication with me, had to venture from Italian hospital to Italian hospital to "prove" that I really needed my meds, and had to pay, in full, before getting reimbursed by my American health insurance, it was possible.
The summer after I did this, I drove cross country with Enbrel and a cooler of ice in tow. Two summers later, right after college graduation, I entered grad school. My AS was in a huge period of remission during this time, and I worked 4 jobs to support myself while writing my thesis; between years of grad school, I backpacked through Eastern Europe for 3 weeks.
There were definitely ups and downs, but I also learned a great deal about myself, how to cope with the craziness of AS, and how to be confident in dealing with everything. ...I'd sign up to do everything, the same, all over again.
If you could send one message to medical professionals around the world, what would it be?
Explain things to your patients, learn their names, listen to them, and work with their other relevant doctors. Understand that we're more than your 3:30pm, second-Tuesday-of-the-month, right-after-your-3pm appointment. I've had doctors tell me everything from the fact that I simply need to be out in the sun more, to the fact that I needed to be put on antidepressants. A team approach is so critical to treating anything chronic, and makes everyone's lives easier and less painful. In the end, the bottom line is that doctor's aren't the experts on your body, you are, and you need to stick up for that fact.
Thanks so much, you beauty!