What I wish I knew
I spoke with a reporter who was writing a piece on Ankylosing Spondylitis. My doctor recommended they get my perspective, given everything I've been able to do while living with the condition. Long story short, I've been dealing with pain throughout my body for over 25 years. At one point, she asked what I wished I had known when first struggling with the disease. I'd never thought deeply about that. I spent some time thinking about that afterward and outlined some things I've discovered on this journey that took too long to learn or come to terms with.
- Move, especially when it's hard. If I wake up and everything hurts, I know the best thing I can do is get moving. I have spent many days in bed or on the couch to avoid the pain. I've learned if you start moving, keeping moving becomes more manageable. The more you move your body, the less it will hurt.
- Ask for help. I was always ashamed to ask for help. I felt like a burden. I still think that way a lot of the time. But people in your life are happy to help you. Just like helping other people makes you feel good, helping you makes them feel good. Give the people in your life the opportunity to feel good.
- Understand what it feels like. It is very easy to be in pain and only think about how much it sucks. But it becomes a lot easier to manage if you can stop and focus on where it hurts and think about what it feels like. If you've ever had an itch and, rather than scratching it, focusing all your attention on that spot and what's causing it, you've probably noticed it will go away on its own. You didn't need to scratch anything. Your mind is powerful. Understanding what things are below the surface makes them easier to deal with.
- Pay attention to what you put into your body. Fifteen years ago, my friend Tania asked me if I'd ever looked at my diet. No doctor had ever mentioned that. It had never been on my radar. I found some resources online and did an elimination diet, slowly trying new things to see how they impacted me. I discovered dairy, especially cheese, causes inflammation every time, pretty quickly. Tomatoes and potatoes cause inflammation in any reasonable quantity. I can eat a french fry without a problem, but eating a basket of fries isn't great. Recently, I've started eating more fruit (as recommended by a great book, Built to Move) and bought some bananas. After eating one daily for a week, I wondered why everything hurt out of nowhere. I did an accounting of what changed and realized the only thing it could be was the bananas. I stopped eating them, and the pain went away. What you eat makes a difference.
- Find some form of movement you enjoy. Use it or lose it. If you want to keep moving long into your life, you must be moving now. I had always pictured a bleak future, thinking there was only one way it could go. I would slowly have less mobility each year. I was feeling it. I was living it watching my mobility decline as I reached my mid-thirties. Then, I moved around the corner from a YMCA with a pool. I'd never been a swimmer, nothing more than splashing around, but people had told me for years to try it. I signed up and went. I was terrible at first, but I enjoyed it. Months later, I noticed walking was easier. The overall inflammation was lower. I could try other things and find things I now love, like running, something I never thought I could do. It doesn't have to be swimming; find something you enjoy doing. And don't just go through the motions. Push yourself with a goal in mind. You'll find you can reach it if you don't give yourself excuses about why you can't.
- Don't settle. If you are struggling to do something, push against that. Don't accept it. It's like you're inside a room, and the wall comes closer every time you settle. If you aren't paying attention, you will realize one day that the room is only as big as you are. When you're at the edge of what you're capable of, push a little further. You will recognize the difference between the pain of AS and injury. The pain of AS isn't going anywhere, but it also doesn't mean you need to stop. It doesn't mean you are going to be injured. You can do anything you want if you don't let that stop you.
- Talk to someone. I spent a lot of time feeling sorry for myself. I was stuck in the mindset that this happened to me. I was a victim. It took a long time for the conversations to sink in, but talking with some good doctors and other health providers made me recognize that walking around with the mindset of a victim was holding me back. I was so focused on how limited I was that I never imagined what I could do. After a while, I realized by me experiencing it as a limit, it would always limit me. I was responsible for what I could do. I decided to change my experience, which unlocked many doors. Through sharing this and other things, I aim to reach the through me stage where other people can learn from my experience.
- Fortunately, this happened to you. I used to wonder why this happened to me. I used to be very frustrated about that. I wondered why my two brothers or two cousins, all of whom had as much of a chance at getting it, didn't get it instead. It wasn't until I read this passage from Meditations by Marcus Aurelius, "It's fortunate that this has happened and I've remained unharmed by it — not shattered by the present or frightened of the future. It could have happened to anyone. But not everyone could have remained unharmed by it." my attitude changed. I realized how grateful I am that this didn't happen to them. You never know what the situation would be for someone else. You're strong enough to take this in stride.
- Challenges make you better. Some of the most influential people in history have dealt with the biggest challenges in their lives. For example, the list of dyslexic people who have gone on to achieve incredible things, such as Thomas Edison, Henry Ford, and Albert Einstein, is astounding. A challenge can defeat you, but if you rise to it, having to work harder and think differently than everybody else can be the most significant advantage in the world. Choose to take on the challenge, and you are only limited by your creativity.
The right mindset will make everything easier, especially on the most challenging days. At the end of the conversation, the reporter asked me what I was the most proud of. It isn't any of the races or distances I've traveled. The thing I am the most proud of is the mornings I get up and go out running when things aren't feeling great. That is the thing that challenges me the most. Challenge yourself regularly. That's the only way you will know what you're capable of.