My juvenile arthritis (JA) keeps me guessing. One day, my knee will bother me continuously; the next, the pain will have moved to my neck. Sometimes I’ll have one blissful day during a flare. I rarely know what I’m going to wake up to.
Many of us with JA find that our symptoms are inconsistent. Flares — periods of increased disease activity — can come and go. But even when I’m not flaring, I’m unsure what the day will bring. Sometimes, a knee will act up in the morning, and by evening, it’ll be perfectly fine. Other times, I wake up with a throbbing joint that hadn’t bothered me before.
Sticking to plans — or not
While pain, fatigue, and other symptoms are hard to deal with, I find the disease’s inconsistency to be particularly challenging. It’s hard to plan when I don’t know what tomorrow will bring, whether it’s preparing for school, a vacation in six months, or deciding where to attend college for the next four years.
Despite being a planner, I’ve realized that life with JA requires me to be flexible about changing plans. Learning to go with the flow and finding the silver lining is critical when living with JA.
When I attended college, I was disappointed that I was unable to take many studio art classes because of their physical nature. Instead, I chose “The Psychology of Happiness,” “Intro to Writing Children’s Literature,” and “Nonfiction Story Telling.” I took amazing lessons from these classes, and I still keep in contact with some of my excellent professors.
The roller-coaster nature of JA can mean that I need to cancel plans at the last minute. Unfortunately, many kids and adults with inflammatory arthritis get labeled “unreliable” or “flaky” because they’ve had to cancel plans or break promises because of a flare.
I have been hesitant to commit to plans in the past. I was nervous that when the day would come, I would find myself in a flare, forcing me to feel bad about having to cancel or meet the commitment despite being unwell. I feared that I would earn a reputation of being flaky. Unfortunately, I do have that reputation with some people.
My new mantra
After many years of living with JA, I’ve recently begun living by the saying, “I am not unreliable: my health is.” This mantra has helped me reaffirm that it is not my fault when I need to change my plans. Sometimes I will have to follow through with my commitments, even when I don’t feel great. But that doesn’t mean that I should always do so at the expense of my health.
Parents, while it’s important to teach your children to honor commitments, it’s also critical that they learn to avoid pushing the limits of their health. Help your children whenever possible — whether it’s lending a hand to help them keep promises during a flare or giving them the confidence to change plans. And most importantly, model the “go with the flow” attitude in your life: it’s so much easier for children to learn this when someone shows them how.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.