When my daughter was just two years old, our family received some shocking news: the pain and swelling she’d been complaining about in her left wrist was not a simple sprain or broken bone but, in fact, the result of a chronic, autoimmune disease called Juvenile Idiopathic Arthritis (JIA).
To say that my husband and I were devastated would be a gross understatement. Suddenly, we found ourselves navigating a world full of specialists and physical therapists and trying to come to terms with the aggressive treatments, including chemotherapy and high-dose steroids, our baby would have to endure in order to best manage her disease. The pit in my stomach never seemed to go away. Over many wakeful nights and through many tears, it was hard not to hope that somehow her doctor’s had “gotten it wrong” or think that our daughter would somehow defy the odds and not see her body irrevocably changed by the ravaging inflammation. As time went on, however – and as people who believe in the veracity of good scientific research – we were faced with the realities of our situation.
And then came the other realities (one which has proven to be one of the most challenging things we have had to deal with as parents of a chronically ill child): lack of public awareness about JIA and the inundation of “helpful” advice from friends, family and perfect strangers on how to get rid of our child’s disease.
It’s just arthritis, right?
JIA is the most common cause of chronic disability in children in Canada, affecting every 3 in 1000 kids. That’s just as common as Juvenile Diabetes and far more prevalent than childhood leukemia and cystic fibrosis, and yet JIA remains dismally unknown (even amongst family doctors) and terribly misunderstood.
The “helpers” can pop up at anytime and anywhere. I’ve been accosted in the parking lot at school by someone who knew of a “miracle cure” diet. I’ve had my hairdresser suggest a cream that she had gotten from her naturopath – it was certain to help. I was taken aback when the very teacher responsible for administering my daughter’s lunchtime meds shook her head at me and asked if I’d “explored other options”.
Never mind that none of these so-called ‘miracle cures’ have been proven by peer-reviewed science. There are 59,600,000 results when you google ‘children, arthritis’ and 34,800,000 results for ‘arthritis, cures.’
I’ve caught family members telling my then six- year old daughter that she – she, who had barely started grade one – could get rid of her disease by just not eating sugar, wheat or dairy. And another family member (unbeknownst to us) performed Reiki on my daughter’s painful ankle with the soothing reassurance that, “it would help.”
JIA: The Reality
I will never forget that warm summer day I was gardening outside when my daughter came down the back steps wearing her wrist splint – on her ankle. “Why are you wearing that on your ankle, sweetie,” I asked (after all, she was just five then and always up for being silly!). “Because if it’s going to help my wrist, then maybe it can help my ankle feel better too,” she said, practically limping down the stairs.
That is the reality of Juvenile “Idiopathic” (no known cause) Arthritis. Children are no more likely to develop JIA after immunizations, infections, trauma or on a certain diet. And 40% of children with JIA will have active disease or are on medications 10 years after onset.
About those medications: the treatments our daughter has and still endures allow her to lead a full and active life. Over the past 10 to 15 years, new biologic targeted treatments have revolutionized the care and outcomes for many children with JIA. Today, the “new normal” for children living with JIA means thriving in the classroom and playing sports outdoors, rather than being housebound in a wheelchair, completely isolated from all the things that make up a person’s childhood.
Sometimes your “helpful” tips hurt
I know you mean well. I know you are just trying to help. But you should know, too: the gluten-free recipe link you just sent my way makes me feel at blame for my daughter’s suffering and only serves to isolate us. The cream you wrote down on the back of a napkin makes me want to burst into tears. More often than not, I grin and bear it. But with every suggestion, I am consequently less and less able to be open and honest about my daughter’s disease and find myself more and more isolated, both emotionally and physically, from my community, my friends and even my family.
Do you not think, when you give your advice, that the thought of our child needing a double joint replacement at the age of 20 or being confined to a wheelchair would have scared us enough to take our child’s condition seriously and explore every option? If there was a miracle cure, I certainly would have found it.
And let me dispel another common “helpful” warning right now: no, the doctors treating sick children like our daughter are not in the pockets of the big pharmaceutical companies. They are compassionate, dedicated and just as devastated when the disease flares up again in her tiny, damaged joints. I have no doubt they – like us – would trade anything for a simple, inexpensive cure.
I get that when I bring up my daughter’s disease it makes people uncomfortable. I understand the desire to want to offer solutions to people in need. But, as is often the case in life, there are no quick fixes or easy answers – and implying that there are only lays blame where there is none. In our case, it also undermines our daughter’s ability to trust us and makes those painful, but effective, treatments even more difficult to administer. What child wouldn’t want to believe that her arthritic joints could be cured by some “kindly touch” rather than a needle every week and pills three times a day?
More Questions than Answers
So, to those out there who are thinking of offering advice about a cure to a friend or a loved one, please think twice before you do. Please consider how it will make that person feel and be open to the reality that they have probably given careful consideration to all their options. Realize that what would be most helpful would be practical support (cooking a meal, babysitting ) and the ability to sit in the uncomfortable space that sorrow or pain creates and just say nothing. Be a shoulder to cry on or a smile in crowd, not a voice for doubt and blame.
Better yet, donate to an organization like Cassie & Friends Society that helps doctors and researchers find answers to what we don’t yet know:
What causes arthritis?
Why do some medicines work for some children but not others?
Can arthritis be cured?
Can arthritis be prevented?
Submitted by: Mireille Compton, Parent Co-Lead, Cassie & Friends Family Advisory Council for Vancouver Island. If you are interested in learning more about Cassie & Friends’ Vancouver Island Family Group, please contact Mireille at firstname.lastname@example.org