Occasionally my JA friends talk about people that just don’t “get it.” OK, we do that all the time. Mostly because there are so few of us and so many of them. And some of them are so obtuse. After all, one reason we have our secret society on Facebook is because if we said what we really think “in public,” someone would surely misunderstand and be offended. In fact, that happens more often than you might think.
We vent about well-intentioned people who offer ridiculous advice. About self-proclaimed experts that tell us how to “cure” our children. About “concerned” relatives that tell us we are poisoning our children. About people that think they understand because their grandma has degenerative osteoarthritis in her knee. About people who assume that because our kids “look fine” they must be all better. About people who think all we do is complain about our children’s medical issues, or even exaggerate them to get sympathy.
I’m going to let you in on a little secret. Our kids have an illness of the immune system (not degenerative osteoarthritis) that is incurable, best treated with disease modifying anti-rheumatic drugs (D-mards) or even more powerful (and expensive) biologic medications, can cause permanent damage and disability if left untreated, can be life threatening, and changes absolutely every aspect of your life. They can appear to be symptom free, when the truth is they are trying so hard to be a regular kid that they hide the pain and suck it up. Even though they know they will hurt more the next day.
Our kids are fighters. They don’t go around telling their friends about the endless doctor appointments, lab draws, x-rays, injections, MRIs, IV infusions, countless pills, constant pain, morning stiffness, and physical therapy. When they are with their friends they just want to forget about all that, consequently their friends don’t really know what our kids endure.
In a way, we parents are the same way. We get so tired of the grind that we just want to get away and forget that our kids are sick. We treasure those moments when we can laugh and talk about something non-medical. We even forget that not all parents deal with these major decisions on a regular basis.
But as hard as we try to forget, it’s still there. Our kids are still suffering. We still can’t kiss it and make it better. At the end of the day, we still have to make that trip to the pharmacy, give that weekly injection, draw that warm bath to relax achy joints, deal with those uninformed idiots, and pray that some day there will be a cure for this hell that imprisons our precious children. It still tears us up inside to see our kids go through this agony. This is something that no parent with healthy children could ever understand.