I remember the first time I heard the words “You have ankylosing spondylitis” from my doctor.
With a confused look on my face, I asked her to repeat what she said. Then I tried to pronounce the same words.
It was like trying to pronounce words from an unfamiliar language without hearing them. Or like sitting down at a new table in a restaurant, and you’re handed a menu written in a foreign tongue – all the words are completely unrecognizable. You guess that ankylosing spondylitis means some kind of pain or stiffness, but you’re really not sure.
Although I couldn’t pronounce my diagnosis, I was very relieved I finally had a name for what was going on with my body for the last several years. And thus began a journey to figure out what this meant for me and my life.
When I got home, I grabbed my computer and entered the name of the disease into Google. What I read shocked me. Ankylosing spondylitis is a chronic inflammatory autoimmune disease that affects the spine and its surrounding tissues, often leading to pain, stiffness, and deformity of the spine.
The scientific information was overwhelming, and so were the heartfelt patient stories. But one thought leaped into my mind during my research: How was this condition going to affect my body?
As I learned more about AS, the importance of maintaining a healthy weight became apparent. Weight management is not just essential for general well-being but also specifically for people living with ankylosing spondylitis.
Extra weight places more pressure on the spine and can increase the risk of further damage to the joints and tissues. Therefore, it’s important for those living with AS to have a healthy weight in order to keep their bodies as healthy as possible.
Unfortunately, as I quickly found out, this was easier said than done. The fatigue and pain associated with AS can make it difficult to stay physically active, which can lead to weight gain. There’s also the risk of medication side effects such as water retention or increased appetite that can add extra pounds.
It was a challenge to manage my weight while living with AS. But I’ve learned that by making small, progressive changes over time, and monitoring my progress, I can work toward maintaining a healthy weight.
For example, I started with small goals, such as taking walks for 10 minutes a day or drinking more water throughout the day. As my body became stronger and more comfortable, I could increase my walking time to 20 minutes daily or add strength training exercises to my routine.
It was also important to become mindful of what I ate. I had to be honest with myself about portion sizes, ingredients, and the type of food I was consuming.
But despite trying my best to eat well and maintain a healthy weight, gradually the disease took a terrible toll on my body, in particular my left hip.
By the time I had my first hip surgery, I had inexplicably lost over 20 pounds, and I wasn’t a heavy person to begin with. When I stepped on the scale at my pre-op appointment and saw that number, I was both surprised and worried.
It was a long 7-month recovery, but I was determined to put on weight so I could regain my strength. It was a slow process, as surgery and medication had taken their toll. But gradually, I worked my way back up to a healthy weight.
My experience with ankylosing spondylitis has taught me the importance of understanding the condition and learning how to best manage it. As far as weight management is concerned, I’ve learned that minor changes over time are the best way to create lasting results. It’s a process and I’m still learning, but I’m finally in a better place and confident in my ability to maintain my weight.
I’m still learning to appreciate my body for what it can do and be kind to myself when things don’t always go as planned. It’s possible to live well with AS, and it starts with having a good understanding of what works for you. And remember, don’t be afraid to ask for help when needed. Your health is worth it. Photo Credit: Delmaine Donson / E+ via Getty Images
Stay connected to others with ankylosing spondylitis. Join our Facebook Support Group now.
Photo Credit: Delmaine Donson / E+ via Getty Images
