What’s everyday life like for people with ankylosing spondylitis (AS)? The short answer: It’s different for everyone.
Anywhere from 0.1 to 1.4 percent of the general population has AS, a degenerative form of autoimmune arthritis that primarily affects the spine and joints, commonly causing back pain and stiffness.
Ricky White, a registered nurse turned writer and stay-at-home dad, shares smart strategies for patients with AS in his January 2017 book Taking Charge: Making Your Healthcare Appointments Work for You. On his blog, Endless Trax, he offers a more personal perspective on AS, describing his own emotional highs and lows. Here he talks to HealthCentral about his coping style, his kids, his medication regimen, and his commitment to living his best life.
HealthCentral (HC): How has AS most significantly impacted your everyday life?
Ricky White: My day-to-day life is completely different in every aspect. I don’t see that as a bad thing, though. In fact, I often count it as a blessing. I’ve learned to become grateful for the smaller things that I used to take for granted — getting in and out of the car, for instance, or tying my shoes. You can’t stress about the things you can’t do anymore. Instead, you have to focus on the things you can do and make the most of the opportunities lying ahead of you.
HC: How has the disease affected the way you care for your kids?
Ricky White: Nothing gets in the way of me and my kids. Not even my disease. Sure, some days are hard. But as long as I’m honest with myself, and don’t push myself past my limitations, everything can be achieved. I’ve certainly developed good time-management skills as a result. On the bad days, I just have to decide which tasks are vital and which can wait. It’s not difficult; you just have to do some planning. Rarely is doing the laundry a life-or-death situation. But feeding the kids is, or they may revolt.
HC: You’re a martial artist. What can anybody with AS who wants to stay active learn from your experience?
Ricky White: I actually got back into martial arts because of my AS. I trained in Shotokan karate as a child, but stopped around age 12. It wasn’t until I moved from the UK to the US, in 2014, that I decided to restart training again, this time in Shaolin Kempo.
I had become overweight, and I was struggling more on a day-to-day basis. I knew my poor diet and lack of exercise were just making things worse. I was also very aware that, now that I was a stay-at-home dad, my children were looking up to me more than ever. I was determined to lead by example, which meant changing my own habits and doing what I could to control my disease. In the end, I lost 35 pounds and have become stronger and more flexible than ever. And on the 20th of May 2017, I was promoted to the rank of first-degree black belt.
My AS certainly presented some challenges, but it was a huge learning experience for me. I realized there were things I could do that I didn’t think possible. The opposite was also true. Getting to know my own body on that intimate level was incredibly eye-opening. I can predict, fairly accurately, how my body will react on a certain day, or after a certain task. This is immensely helpful when I’m scheduling my work and play.
Staying active is imperative for anyone with AS. But the lesson I learned early on in my martial arts training was the necessity of recovery time. It needs to be planned into your week. Treating your recovery time with the same level of importance as the exercise itself is key. Ignore the recovery and you’ll soon burn out or get injured, which just makes it more likely you will give up doing the thing that may be helping you the most.
HC: As a writer, you spend a lot of time sitting in front of a computer. Is that hard on your body?
Ricky White: Sitting for prolonged periods of time is difficult for most patients with AS. The inactivity leads to increased stiffness and pain. So 20 to 30 minutes is really the limit. After that I have to get up and walk, and sometimes stretch. I’m not always as disciplined with this as I’d like, so I’ve started standing more to work.
The only issue is I don’t have a surface high enough for my laptop, so I tend to look down at my screen. This is obviously bad for my neck. So I’m putting serious thought into investing in a good standing desk. Hopefully this will help my workflow. Stopping every half hour to walk can be an unwelcome interruption, making it harder to get any kind of momentum going.
HC: What is your pain management like and how does it shape your life on an everyday basis?
Ricky White: My pain management varies greatly depending on the type and severity of the pain. As I mentioned, my martial-arts work has helped me become attuned to my body. So, I know if my pain is active inflammation that I can treat with ice and stretching. If it’s more muscle pain and spasms, then I use hot therapies and exercise. And throughout I use non-steroidal anti-inflammatory drugs.
In the more extreme bouts of pain I use “big boy” pain killers, but I prefer to save them for when they are absolutely necessary. There is no one piece of advice I can offer to help others, as AS and chronic pain are very individualized. All I can say is learn what works through trial and error, and create a routine around that.
HC: Your book is about communicating more effectively with your health care team. Do you have any advice about how to communicate with the people in your everyday life — your boss, your spouse, your friends — to get the support you need?
Ricky White: It’s unrealistic to expect anyone who doesn’t have AS to “get it.” The best we can do is educate them with specifics — how long we can sit, the drugs we take, and their side effects — and be honest with them. That last part can be a struggle, too.
Sometimes people with AS worry that if they reveal too much, they might lose their job, or their partner will leave them. In my experience, the opposite is true; honesty often helps form stronger bonds with others. It builds trust, regardless of the type of relationship. But it’s impossible to be honest with others if you aren’t honest with yourself first. As a stubborn guy, I can tell you firsthand that lying to yourself will only make things harder in the long run.
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Pamela Kaufman, a writer and editor in New York City, got her professional start covering health and fitness for Vogue. Learn more about her life as an adventurous eater and mom to two feisty young boys by following her on Instagram @pamkaufman.