This is a question I hear all the time, “Why are you so passionate about Juvenile Arthritis Kids?” And the reason people ask is valid, first because I don’t have a child with juvenile arthritis, and second I did not have juvenile arthritis as a child. So some might think I can’t relate, but those are only people who don’t know me very well.
I understand kids and teens that don’t fit in. I spent most of my childhood in foster homes. Foster homes are places where people take in children for money to pay their bills. At least my foster homes were like that. I was different from the other kids at school. It is not good to be different as a child. Kids want to fit in. When I see the misunderstanding and bullying that goes on for JA Kids it takes me back to my childhood. Kids and parents didn’t understand why I didn’t have a mom to pick me up, why I was quiet and shy. When I see JA kids I relate. It might be cool to be different as an adult, but as a child, you want to belong. You never want to be different.
And I understand arthritis. Not the kind that most people get as they get older, but the autoimmune kind that takes over your body whether you are two years old, sixteen years old or thirty years old. The kind that makes it hard to do things, hard to participate and hard to be normal. I have been through all of the stages; swelling, pain, weight gain, joints that can’t support you or work as they are supposed to, making simple tasks like writing, pouring milk, combing your hair or buttoning up your shirt difficult. Normal things like walking, playing sports, picking up a little younger sibling, even picking up a glass of milk difficult and painful.
And I understand the reason people don’t understand this mis-understood disease. They hear the word arthritis and they think “old.” “Kids don’t get arthritis.” “Your kid is just lazy.” “Your kid is slow.” “Your child is just making excuses.” These are all common statements when children and teens have juvenile arthritis. These hurt, really hurt anyone, but imagine the little ones, the pre-teens, the teens that only want to be normal. Only want to be like the others their age.
And I understand the doctors, the hospitals, the treatments, the medicines and all the tests, way too many tests. JA is a disease that manifests differently in most everyone and each patient needs a doctor that is trained in rheumatology, but there is a serious shortage of pediatric rheumatologists in our country, serious. It’s imperative to find the right treatments and medicines for each patient. It can take weeks, months or in most cases years to find something to halt the disease, or at least make it bearable.
And I understand why most kids don’t want to talk about their JA. I hid my RA for 20 years so that I could continue my career in television and be considered normal. As the media will tell you, “arthritis” is not a “sexy” disease. It’s considered an old person’s disease and television needs to gear to the young. Ratings are all that matter in TV .
When I finally decided I needed to share the importance of hope in adult RA, I found out that kids, babies, toddlers, and teenagers had the same disease. I was shocked because I too never thought kids got arthritis. And when I started meeting these kids and their families through work with the Arthritis Foundation they broke my heart. I knew how difficult my 20 year journey had been, but for kids? How could they cope, how could they play soccer? How could they dance as teenagers? How could they take the same toxic medicines that I had been on?
And as I meet more and more JA kids I understood. They don’t always have normal childhoods; their childhoods are compromised. Their teenage years are compromised. As one teen told me when I asked her how she was doing, “Well, at least I can go to school this year. Last year I couldn’t.”
And most of all I understand how important HOPE is to the families and the kids. I know because my doctor never once gave up on me, never once lost hope that we would find the right meds. I can’t say the same for myself going through the journey.
But my doctor was right. One day, 20 years into RA, he found the medication that put me in medical remission. Hope became a reality. I knew I had to spread that news, never give up, and never give in—Well, some days you just have to-but never think that your entire life is ruined. I had to spread the word that research is turning out newer and better meds and treatments. That one of my doctor contacts at the Mayo Clinic said, “there will be a cure within my lifetime.” And I ask him every year if he is still positive there will be that cure and every year he says, “YES.”
So I do understand. I really understand. I understand it is not fair. It is not the way childhoods should be. It’s OK to feel sorry for ourselves but then we must pick ourselves up and believe in HOPE. We must stay positive and keep trying. We must work to be as normal as possible.
And you might be saying, how do you know positivity and hope are the answers? I know firsthand from my own experience and I also know from what I have read on my Facebook page Christine’s Superhero Juvenile Arthritis Kids.
I know that JA kids and teens are true Superheroes. They share their stories to help others. They fight for their childhoods. They fight to be normal. If there is anything good that comes from this disease, it is the ability to use it to make ourselves stronger. Sometimes we can’t be stronger in our body, but we can be stronger in our mind. Sometimes adversity can be our key to strength.
And this I know for sure, Juvenile Arthritis kids and teens are special.
They are survivors.
Their families are survivors.
They are a special kind of different.
To visit Christine’s Juvenile Arthritis Kids Facebook Page, click here.
TAKE ME HOME FROM THE OSCARS
Arthritis, Television, Fashion and Me
BY CHRISTINE SCHWAB
AVAILABLE ON AMAZON.COM