Secrets vs. Shouting: To tell or not to tell that you have juvenile arthritis
Written on June 25, 2015 by Christine Schwab
I never was good at keeping secrets and yet I kept a major one for twenty years. I felt I had no choice. In reality, I didn’t.
They don’t even have to finish the sentence.
Because I totally get it.
Those of us who have and do keep secrets about our health do it for a reason. The reasons vary from wanting to be cool and fit in at school, to being embarrassed or afraid what people will think when they find out you have what is perceived as an “old person’s disease.”
Or in my case, rightfully afraid that I would lose my career in television that I had worked so hard to achieve. If there is anything the image of arthritis doesn’t fit in with, it’s television, especially if you are a fashion reporter.
And so, with the teens, I just tell them I understand and if they ever feel the need to talk or share they know how to get in touch with me. I understand because I have been there.
I also understand how good it feels to come forward and share…but only when the time is right time. And nobody, not me, not your best friend, or someone you admire can tell you when it’s the right time. Because nobody understands what it’s like to have rheumatoid arthritis except someone who has it, or has a relative who has it, or a rheumatologist.
Ask anyone what it is and they will say, “what old people get” or “what my grandma has,” and you know with those simple words that they don’t understand that rheumatoid arthritis and juvenile arthritis are autoimmune diseases that has nothing to do with your age. Toddlers, teens, and young adults get it.
And unlike regular arthritis, known as osteoarthritis (the wear and tear on your joints as you age), Rheumatoid Arthritis, or RA as it is called for adults and JA, Juvenile Arthritis as it’s called for kids and teens, can attack almost any part or organ of the body and it knows no kindness to age or status.
You can be a President of the US or you can be a one year old trying to walk and suddenly your life is turned upside down with pain and change.
After twenty years of keeping my secret I was accepted into a research program at UCLA for the first biologic. Research can be scary because every week you hear stories of people who fell out due to severe symptoms, someone died, and a few contacted another disease. It may have had nothing to do with the trial program, but none-the-less it had to be reported to all participants and they had to sign a waver saying they understood, when in reality it only scared them more. Many people dropped out. I chose to stay the course and luckily my RA went into remission that has held to this day.
RA Remission was my truth serum. Something about getting my life back made me realize I had to give up my secret. And that is when I met the arthritis community, started the Christine’s JA Kids page and had a support system not only for the kids, teens and their families, but for myself as well. Everyone in the community understood. They knew it wasn’t an old person’s disease. They knew the JA kids weren’t lazy, slow or faking. We were all talking the same language.
Keep your secret if it works for you, but at some point join me in shouting it to the world because that is how we make a difference. Shouting to Capitol Hill, to our family and friends, to media and to anyone who will listen. With each shout, we get a little closer to understanding. A little closer to being an advocate and helping others. A little closer to giving back and that along with the new medicines and treatments will get us closer to the real goal…a cure.
Secrets sometimes are necessary but very lonely. Shouting might be loud but it will be heard.