Dear Juvenile Arthritis Mamas

Dear Juvenile Arthritis Mamas,

Thank you for welcoming me into your community, but can be honest? I don’t always feel like I fit in there.  

I’ve had arthritis more of my life than not, but I have no idea how to be a mom and navigate this lonely journey. I’m thankful for your unbelievably, tireless efforts to figure this out. Your kids, and mine, are better for it. Your kids, and mine, make me a better warrior. They’re watching, and I feel a great responsibility to show them how to fight their disease.  

Growing up with arthritis, I know the ups and downs and what it’s like to be a kid with this, but I wasn’t prepared for my own child’s pain. None of us are.

A few weeks ago after our last rheumatologist appointment, my daughter Ava and I were having lunch, silently, taking it all in. When we finished, she asked me somberly, “Mom, when is this going to be over? I’m sick of living in pain. I’m so tired of fighting. When am I going to be normal?”

My heart fell to my belly. We hugged and cried during lunch hour in the middle of Subway. I couldn’t honestly tell her it was going to be all right, and I sat wondering the same thing for myself and my own disease. It was my largest JA mom fail to date, but I know it won’t be the last.  

At the very least, I take comfort in showing her I’m human. I have loads of hope and faith, and they get me through each day, but I just couldn’t look her in the eyes and pass it on in that moment.  

You would have though. You would have rocked that moment and restored her hope. It’s not a competition; neither one of us are going to come out of this without scars.

What I can offer is some advice on being a kid with arthritis.

Let them be a kid as best you can. I know it’s scary to send them in the world with suppressed immune systems and sick little bodies, but do it anyway. They don’t want to be “the kid with arthritis;” they just want to be like their friends. Let them talk about it on their own timelines. They need to feel comfortable in their skin; arthritis is their normal. I know as mamas we probably overshare because it consumes us, but their friends might be their escape. Let them have that.

Teach them to advocate for themselves. You’re not always going to be there, and the real world doesn’t care that they have arthritis. Our kids have to know how to fend for themselves to get what they need. People may not always understand their disability because our kids may not meet their predetermined expectation of what sick should look and act like. Make sure they know how to answer those questions and help them realize it’s not personal. It’s not about them.  

Teach them that strength is not defined by their ability to not show fear. I get frustrated, sad and angry about this disease all the time. I’m human. Some days I don’t feel like fighting, so I don’t, but that doesn’t make me any less strong. I will get another chance tomorrow. Teach them to embrace their limitations; there’s strength in admitting their vulnerabilities.

Most important, love them through it just like you’re doing. Sometimes it’s a real drag to be sick, tired and full of pain all the time. We act like jerks and we don’t mean it. Bad behavior needs to be addressed, of course, but after that, love on them more.  

Their arthritis will make them kinder, gentler more compassionate human beings — I promise. They’re better because you’re fighting along with them. You’re doing a good job. Keep going, mamas. Your work matters.

Love,

A JA Warrior and Brokenhearted Mama

(Please note, dear mamas, I have no judgment of you. There are always exceptions and every kid is different.  I offer my best advice with the best of intentions. It may not fit you and that is OK. You’re doing the best you can and I get that. Keep doing you; I support you.)