9 Tangible Ways AS Has Helped Me

I can tell you 10,000 ways AS has limited me, annoyed me, pained me, frustrated me, and made me feel just awful. I know you can, too. In fact, I have waxed poetic about my (very valid) woes many times here in this community. I believe confronting the truth is necessary — and there's nothing wrong with limitations and differences. It is okay to have different abilities. It is okay to struggle with this.

But this time, I want to list 10 ways that AS has helped me grow, learn, and be more creative. Is it fair that it took a disease to learn these things? No. Is it the best I could have learned these qualities? No. But nonetheless—I honor them, as flawed and messy as they are.

It taught me to be resourceful.

Have you ever had to plan your day around being exhausted (and still get things done), use your energy wisely before it runs out, save money on prescriptions by using a coupon program, or find the cheapest flight with the best seat arrangement (because it's uncomfortable up there in the skies!)? Having AS has made me think out of the box, get creative with my planning, and make things happen in a way that works for me.

It taught me how to ask for what I need.

I used to be super uncomfortable speaking up for myself. Once, at an internship, I sat in migraine-pounding pain doing an annoying assignment after hours (for free!) for an editor. I have had more than one of these occasions. I've left doctors' appointments without having questions answered. Not anymore. AS has taught me that I am in charge of my wellness and that I have to steer the ship. I now speak up for myself more regularly, whether that means asking to change tables if the seat hurts or demanding a blood test when the doctor says I don't need it.

It taught me to stick up for others.

I hate to admit this — but when I didn't have AS (or anything like it), I didn't think about accessibility or accommodation or disability. I was young, naive, and selfish. By 24, recurrent bouts of uveitis gave me a sense of what it was like to be differently-abled, and this made me have deeper empathy for others. I now take a stand for disability rights, and I speak up when someone is neglected or abused due to their body or their mental or physical abilities.

It taught me to get over my blood being drawn.

Look. I spent so much of my childhood in a state of utter demonic possession, kicking and screaming to get adults' hands off of me as they held down for needles. I got a lot of needles as a kid, particularly because I always got poison ivy and needed steroids. I'd pass out, shake, convulse. It was a dramatic affair. But nowadays I just close my eyes and try to take it. Yes, I'm still scared as f*ck, but I have been able work through it better because needles are no stranger to me today.

It taught me to exercise daily and take my nutrition seriously.

I have always been into movement and dance, but after being diagnosed with AS, I've taken movement seriously (rest is rust, right?). Whether it's 10 minutes of yoga in the morning or night, or swimming, or a dance workout, I make time daily.

It taught me to have more fun when I DO have fun.

I have gotten so much more hermit-like since my diagnosis. I'm tired, and I need to store my energy like acorns. So when I do make a choice to go out and have fun — I do it up. I get glamorous, dance, enjoy wine and good food, and stay up all night. Sure, I pay for it but it was usually worth it. It's become more precious, and I'm more present and appreciative of it.

It taught me to do my research.

I no longer use social media or grapevine gossip to confirm my thoughts on things. I'll talk to people, sure, but I use science journals (PubMed can be used by anyone) and health organization resources (like NASS and Spondylitis.org)  to validate my questions on medication options, side effects frequency, stats on medication success, and anything else that comes up. AS community groups are great — but learning to do the research is better.

It taught me how to talk to manage my energy.

I now feel absolutely ZERO "fomo" (fear of missing out) if I skip a party or a night out. If I'm tired, I'm tired — and I honor that. I pick my where I place my energy and let my energy levels guide everything I do — from who I engage with, where I go, and the projects I work on. It's not always negotiable, of course, but being mindful of my energy is life-changing. I had NO idea about the importance of energy conservation before AS.

It taught me travel smart.

Neck pillows? Back patch? Check. Finding a direct flight for the same price? Check. Figuring out how to get from point A to point B without losing my mind? Yep. Picking an accommodation that doesn't make me feel super uncomfortable (but isn't extravagantly priced)? I've had to start figuring it out. Finding ways to get an upgrade? Check. Researching the train with the most likelihood of seating availability? Got it. Planning out a day trip that isn't totally unmanageable and tiresome? Definitely. Knowing where to set my things down for a much-needed rest in the middle of Vienna city center? I already Googled it.