I was reminded recently of the public perception of juvenile arthritis as compared to cancer. The phrase, “At least it’s not cancer,” seems to be spoken to many a JA parent in an attempt to console their fears upon learning of this life changing diagnosis. Some of my well-meaning friends have said very similar things to me over the past 3 1/2 years.
While I try to never minimize the suffering of others, it makes me bristle when the general public sees juvenile arthritis as no big deal. Yes it’s a big deal. Kids are permanently disabled or disfigured, go blind, and even die from complications. No, not every one, but not every cancer patient has to endure surgery, chemo and radiation. Plus many cancer patients go into remission and live long productive lives after their treatment is over.
With juvenile arthritis, there is often no remission. Even if there is, it is usually after years of pain, injections, pills upon pills, IV infusions, strong biologic medications, surgery, chemotherapy (yes, the same medicine given to cancer patients), side effects, and ironically, risk of cancer. That sounds like a big deal to me.
I’ve discovered that most people think since Marty is doing well, he doesn’t need treatments anymore. No, the treatments are WHY he is doing well. It took us three years to find a medicine that allows him to act like a normal kid again. Of course it is atrociously expensive, but thanks to the state children’s health insurance, my copays are manageable. I will gladly miss one day of work every two weeks to keep him relatively healthy.
My fellow JA parents are constantly reporting ignorant comments they hear, questioning whether their child is really that sick, wondering if they are babying their child in pain, and making comments that seem to blame the parent for something they did or didn’t do. Frankly I’m sick of it. I wish there was a better way to increase awareness of juvenile arthritis. Most JA families don’t even know it exists until they are affected by it.
Don’t get me wrong. I’m not trying to say cancer isn’t serious. I’m just saying it’s not the only life threatening illness that strikes children.
Oh, and if you hear of someone with a new diagnosis of any type, don’t think you’re helping by telling them, “At least it’s not cancer.”