Tuesday, January 24, 2012

Really Good At Fooling Everyone

There are a lot of people out there who write about their life with arthritis. You can find a number of different blogs by normal, wonderful people who talk about their struggles with RA. How they cope. How they try to help the people around them understand their pain. Often you will find people who have children with juvenile rheumatoid arthritis and they work hard to help maintain a happy childhood for their kids with pain they can hardly understand. It’s all out there, and it’s all helpful.

But no one really talks about what I spent a majority of my life with RA doing . . . pretending I didn’t have it.

When I was diagnosed I was 12 years old, in middle school, going through the tumultuous, chaotic world of an adolescent. The last thing I wanted was to have to deal with something that would make me more of an outsider, different from all my friends, less “cool”.

So I went on as if nothing was wrong. I’m not sure how many of my friends at the time knew what I had and what I was going through. I didn’t get into the details much, because at the time I really didn’t know much myself. And I really could care less.

This attitude continued on through high school, and it didn’t help that boys started to become a bigger part of my life. Let me tell you, nothing makes a teenage girl sexier than swollen knees and little to no energy. I had 2-3 girl friends that I’m pretty sure I told. It seems so long ago, and I cared so little about it that it’s hard to remember.

I got really good at covering it up. I might miss a few days of school in order to see my rheumatologist, have a minor arthroscopic surgery, or I just couldn’t get myself moving much that day. But those were things that were kept hidden. You wouldn’t know it from looking at me that I had more of a burden than your average teenager. And I lived that way for my entire adolescence.

Even through college I rarely told anyone. I had to tell a few professors about it, mainly because I was having Remicade infusions throughout college and I needed to be excused from a day or two off every month. That was a weird thing for me to get used to – being open about my arthritis to people who actually had a need to know.  I was a theatre major and took movement and dance classes often, so I had to keep those teachers up to date on my body, but there was no need to share the details of these conversations with any of my classmates.

It wasn’t until years later that I started writing about my life and opening up about my arthritis. I’m pretty sure it surprised a number of people who have known me growing up.

In some ways it’s therapeutic to be able to talk openly about my health, but I still find myself keeping quiet about it unless somehow the topic comes up. There is no real need for me to gab about my achey joints to my neighbors, or bring up how swollen I am when we’re out at dinner with friends. I prefer people to see me as I am, not labeled as the poor girl with arthritis . . . (and why does she have arthritis if she’s in her 20s? weird!)

Like I said, you can search the internet for a number of people teaching you how to explain to others what life is like for you. I think it’s important to be open with the ones you love, and to not keep your troubles inside as it can prove to be unhealthy to hold those things in. But you should also be able to live how you want to live. If that means keeping the details of your health to yourself, so be it.

And hopefully those parents out there with kids who have arthritis read this and understand – when you are growing up and dealing with RA, there’s nothing you want more than for it to go away. Some of us cope by keeping it a secret and that’s fine.

Eventually we all learn to embrace it and understand it . . . but for now, let’s fool everyone. 

This article was originally written for Achieve Clinical Research, and can also be found here.

1 comment:

  1. My attitude has always been...different strokes for different folks. And what may work for one will not work for another. I can truly understand that for you and possibly others, keeping it to yourself was the best way for you to enjoy your life. I never told either of my employers that I had ra. I felt more confident knowing that only I knew and it worked just fine for me. So I do get it. Fortunately you were able to keep it your secret and apparently this method worked just fine for you :-)


I love your feedback! Leave a comment and let me know what you think, and feel free to send me an email any time.