It’s finally the month where we get to extra loudly remind everyone that kids get arthritis too. I am often met with one of two extremes when I tell someone about the young age of my diagnosis: shock and horror, or extreme pity and disbelief. Nobody is too young to be captured by our disease. Unfortunately, that fact is often overlooked or forgotten. Being a kid with arthritis is a hard and lonely battle, so I compiled a list of things to remember that I wish someone had told me when I was diagnosed at 9 years old, in hopes that someone else out there might need to hear it, too.
1. You are lovable and valuable.
No matter what. Nobody can take that away from you. Even if you do need more help than others, even if you need medication and lots of trips to doctor appointments, even if you cannot play on the playground the same way as everyone else…yep, you are still lovable. You have so much value to contribute to the world. Do not get caught up on what you “cannot” do and lose sight of your worth.
2. You are fun.
Just like being valuable, being fun has nothing to do with your physical abilities! The phrase, “You don’t have to have fun the way that everyone else does,” is so true. If there comes a time when someone does not want to be your friend because you cannot play red rover or hold their hand because it hurts so much, it is not because you are a bad person or because you are not fun. It is because they don’t understand. If you search very hard, you will find empathetic people who want to understand you, who will love you for who you are, and they will think you are the most fun person in the world – even on days when you can’t get out of bed. I mean it.
3. You are beautiful.
You might have nodules, swelling, rashes or symptoms of an otherwise invisible disease that set you apart from other kids. You may feel insecure about your swollen joints and scars and bruises from treatment. I know that you may call yourself “deformed” – but that isn’t true at all. Every type of different body is beautiful, even and especially the tiny warrior bodies who grapple with a big disease like arthritis.
4. You are strong.
Strong is not a physical trait. Everyday your body fights a battle against itself. You do not need to play sports or be athletic or push yourself to the limit to be strong. It is awesome that some people excel in those things, but it is not where strength lies. Strength lies within a person’s spirit.
It is easy to be sad when you realize you have a degenerative condition at an impossibly young age. It is easy to compare yourself to others and feel inadequate, misunderstood, or even ugly. It is easy to be afraid of the future. Sometimes, that is OK. Sometimes you need to be sad. But no matter what, you cannot forget who you are and why you are valuable. That is the fuel for your fight.
“Everything you feel can be fuel. Heartbreak. Awe. Outrage. Wonder. Fear. Love. Anger. You can let it power the rocket ship or blow up the rocket ship. But you’re the rocket ship. And we need you tomorrow as much as today” – Lin-Manuel Miranda
You can live a full and amazing life whether you go into remission or not. I’m 21 now and I am excited for more decades of fighting the good fight and searching for a cure. I believe that someday it is going to be OK. We will keep fighting together!
You are valuable, fun, beautiful, and strong.
Getty Image by SinanAyhan