Pearls of Wisdom

After living with Ankylosing Spondylitis (AS) for nearly 50 years, I have discovered certain truths and gathered a few pearls of wisdom along the way.

My childhood dreams of motherhood did not include fatigue, stiffness and pain. But by the time my husband and I finally began talking about parenthood, I couldn’t remember what it was like not to have pain. Pain had become a part of who I was and, for whatever reason, I did not consider my symptoms to be an obstacle.

When pain reaches a threshold, making it impossible to ignore, I try to arrange my schedule so I don’t get overloaded with activities on the same day. I can deal with pain more easily if I’m not over-tired and under stress. I’ve also discovered that keeping busy works well as a distraction technique. Finding the right balance of rest and activity plays an important role in the management of my chronic pain.

When pain forces me to take things easy, I often get angry at myself because, usually, I have done something crazy to bring this on; such as washing walls, for example. What I have discovered is that most things I get angry at not being able to do, I don’t necessarily want to do anyway. After all, how many of us really yearn to wash walls? What counts is enjoying personal relationships and meaningful activities. Having AS has never stopped me from doing these things.

Although, I’ve regretted not being able to share in my children’s and husband’s enthusiasm for physical activities, I’ve shared in so many other aspects of their lives that I don’t feel left out. I realized, before I felt badly about what I couldn’t do, I needed to take a close look at my priorities.

One very important thing I’ve learned – here come some pearls of wisdom: do not over-compensate for having arthritis. It was a long way down the parenting road before I realized I was over-compensating. I tended to look at a child’s coat dropped at the doorway with a certain sense of urgency. An “I came, I saw, I conquered” attitude. I was too busy proving I could handle it all; thinking that to ask for help was akin to admitting defeat. I never took the time to question whether the coat was my responsibility in the first place.

I quickly realized a sense of humor is a saving grace. Laughter is, indeed, the best medicine. Many times, in unfortunate situations, we can find a funny side. Finding that funny side helps me put things into perspective and makes many of life’s more difficult situations a lot easier to deal with.

There are many ways I have learned – and continue to learn- about arthritis and how to deal with its symptoms. I’ve learned a lot by asking my doctors questions, reading, becoming a volunteer with The Arthritis Society and having my ideas validated during an Arthritis Self-Management Program (ASMP) or at the Living a Healthy Life with Chronic Conditions classes. While leading classes and training new leaders and trainers, I’ve continued to learn. In fact, I learn something new from participants in every workshop.

Hopefully, during the rest of my life, I will gather a long strand of pearls but for now I will hold on tightly to the ones I already possess: those pearls of wisdom that represent a continuous learning process; that is: competence to comprehend and accept my capabilities, and the ability to differentiate between my genuine responsibilities and those that are self-imposed lofty expectations. The most treasured pearls of all, however, are those which represent my understanding of the important role played by family, friends and laughter.

Ankylosing spondylitis (AS) is a type of arthritis that mainly affects the spine, although it can also be present in other areas of the body. Ankylosing means “fusing together”; spondylitis means “inflammation of the spine.” AS is associated with a genetic marker (HLA-B27), which is why it tends to show up in some families more often than others.

There is approximately, a 50% chance that a child of one HLA B27+ parent would inherit the gene and that a small percentage of these would develop spondylitis.

Anne Riddick is Secretary to the National Ankylosing Spondylitis Society