Pathways of an RA Life: From a big secret to can’t keep quiet about arthritis
Written on January 26, 2015 by Christine Schwab
Twenty years with only my doctor and immediate family knowing about my battle with RA.
When people hear I kept silent they are shocked.
“Why couldn’t you let people know?” is their first question.
“Didn’t your symptoms give you away?” is always the second.
And if you’ve read my latest book, Take Me Home From The Oscars: Arthritis, Television, Fashion and Me you already understand. It wasn’t hard to keep silent, in fact it was easier for me. Silence had always been my safety blanket during my childhood. If I didn’t tell the kids at school that I lived in foster homes most of the time, seeing my mom only a few days a month, they would think I was normal. I only wanted to be normal and fit in. Silence made that possible just like silence made it possible for me to keep my career in television as a fashion and lifestyle reporter. My perception of arthritis at the time I was diagnosed was from watching Arthritis Telethons years ago on TV where everyone was old and crippled.
Many coveted my career. Some blatantly tried to take it away from me. I couldn’t give them the ammunition that would help them. I had finally made it and it felt good to be accepted and appreciated, things one never feels in foster care. I finally felt normal.
And because I was in fashion I knew how to cover up my RA symptoms. Feet hurting? Sneakers became my trademark. I convinced millions on television that they were the latest trend before that was actually a fact. Kathie Lee even commented on air one day about my high top khaki sneakers, “You have to be very confident to wear those sneakers, Christine.” And my years of thinking on my feet because of working with Regis Philbin kicked in as I replied, “Kathie, these are the hottest sneakers for spring. Everyone’s wearing them.”
I knew how to alter my makeup, hairstyle and wardrobe in order to keep working through weight gains while taking high dosages of prednisone. It’s what I did for all my makeovers on TV so it was easy for me to do it for myself. A little more length in the hair, a little shading on my cheeks, a little more emphasis on the eyes did the trick.
And then 20 years zipped by and my secret was still intact.
So what made me come forward and take another pathway in life? Enbrel.
My doctor had been able to prevent visible physical damage with his constant adjusting of my meds until I ran out of meds that worked and went into the trial program for Enbrel. I couldn’t take any other medication other than the secret Enbrel dose I was getting, either the full dosage, half dosage or placebo. I wouldn’t know until the six-month trial was over.
When the trial ended I learned I was on the placebo. It taught me three things: one, the power of positivity, two, that a new pathway was opening up in my life and three, it was time to give back
I contacted the Arthritis Foundation and said I wanted to use my media experience to change the perception of arthritis. With the new biologics everyone wouldn’t end up in wheel chairs. And that was when I found out kids got arthritis, too, and young adults, and people like me. And then it hit me, if I didn’t know about the kids and young adults with arthritis others must not know either and that’s when Christine’s Kids Facebook page was created. I didn’t want these kids to feel alone and different like I did as a child. I wanted them to feel like they could conquer anything and everything, that they were Superheroes.
The JA stories overwhelmed me and broke my heart but the spirit of these kids amazed me. Their strength and determination inspired me. They fought adversity and I, as a child, had fought adversity. I understood not only their disease but also their fight for survival. Their fight to be normal.
And as much as I loved fashion, I loved the bond I felt with Juvenile Arthritis even more. I understood what they were going through physically and emotionally.
I had heard about second acts in life and now I am living one. It’s totally different than television, it’s real, it’s painful, and it’s inspiring. My first act in the fashion world came from my love of clothes and the belief that everyone can look their best if they just know the secrets. That we can look and become whoever we want to be with the right style. My second act, in JA advocacy, came from my past and the belief that no matter what, you can overcome adversity and use it as strength.
My latest goal?
Every day to try to remind a child who believes that they can’t achieve their goals that they will find a way.