When I started to show the symptoms of Juvenile Rheumatoid Arthritis as a child, my world changed. I went from being an active, jumping, climbing, running little monkey of a girl to one who couldn’t even walk. To get around my home I would sit on the ground and drag myself on my butt, using my heels to pull myself forward. In the shower, my mother would shampoo my hair because my hands were swollen and painful and I could no longer do an adequate job of it. I couldn’t dress myself and sometimes I couldn’t even feed myself. I struggled to fasten buttons on my shirt and to open taps and bottle caps. I constantly spilled drinks because my wrists simply could not grip the cups anymore. Just moving was a challenge because my joints had somehow painfully frozen. There were many months of bed rest and not walking as I took a year off from school to experiment with medications and physical therapy, while doctors tried to figure out how to best manage my condition.
I remember vividly how frustrated I’d feel when I couldn’t do these basic tasks, like twisting the cap off a bottle. First I’d get angry at the drink for having been capped so tightly. Then I’d get angry at myself for not being able to do something as simple as open a drink. Rage and frustration would bubble inside me until I eventually exploded. I’d scream at the drink and eventually scream at myself. Then I’d collapse onto the floor in tears and feel like I was a failure, because I couldn’t do a simple task which every other person could do – a task which I was once able to do on my own. My body was failing me and I just could not understand it.
I felt ashamed of myself. I felt angry with myself. I felt sad for myself. I felt helpless. Those are quite a few intense emotions to be coming from a 7 year old, right?
Have any of you ever felt this way because you couldn’t do a physical task due to JRA?
I’m now 28 years old and a lot stronger and mentally equipped to handle my condition than I was at 7 years old. I guess that’s why I’ve started this site, so that one day when a young person with JRA googles her condition, she will be able to read some posts by someone who lived through what she’s currently living. And I hope that she won’t feel so frustrated or so alone – that she’ll realize she’ll be okay. You will be okay. 😉
It’s been 21 years since JRA entered my life. And you know what? I still get difficulty in twisting the cap off a bottle ;). But the way I feel when I can’t open the bottle has changed completely. When I can’t do a physical task, I don’t feel so frustrated anymore. I’m able to stay calm. I keep trying until I realize that I really physically can’t do it. If someone is nearby, I’ll ask for help. If no one is around to help me, I accept that I can’t open it and I move on. I don’t feel like a failure and I don’t feel helpless. I don’t even think about it anymore.
It’s a gradual process as we learn to accept our limitations with JRA. No one wants to be called weak, right? Especially not young Super Women who are thirsting to experience our beautiful world. I think time and experience really helps us here. As someone who strongly believes in going out and creating your dreams, I still hate having to use the word “can’t” in my vocabulary and I dislike having to ask for help. But I have had to humble myself and be honest about what my body can physically handle. Part of accepting JRA meant accepting my physical limitations. Part of this acceptance came from realizing my worth and talents in other areas and loving myself exactly the way I was. I soon realized that my inability to open a bottle cap did not impact on my ability to share my personality with the world, to do well in school, to make friends or to enjoy life. And I stopped feeling angry and ashamed and sad as I learned to love myself with JRA.
If you are newly-diagnosed with Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis, please know that the world is still yours and you still have so much to offer. It is natural to feel frustrated and to mourn the loss of what we were once able to do, so don’t beat yourself up if you feel this way now. It’s indeed scary and frustrating when our bodies start changing, when our joints start swelling and we start losing our mobility. Loss of control of our body is an enormous fear for any person. Who wouldn’t feel frustrated?
Hang in there friends. Things are going to get better – believe that. These tough periods make our backbones grow and bring out the strengths we never knew we had. Where our bodies start failing us physically, our minds start to become stronger mentally. You are going to get through this rough time.
I look back at my 7-year old self and I feel sad for that little girl. But at the same time, I wouldn’t change anything. All those emotions had to come out in order for me to find peace and acceptance with my physical limitations. It’s a process, but time really does help. If you are struggling, remember that even with JRA you are still the same person – with the same mind and the same heart. That hasn’t changed. What has changed is the fact that you’re getting mentally stronger with every day that passes. Make sure you channel all that strength in a positive direction. 😉
If parents or loved ones of JRA fighters are reading this, please have patience while your children or friends sort out this process and learn to accept this disease and their physical limitations. Don’t make them feel bad if they ask for help. It is really difficult to ask for assistance and admit that you are struggling physically to do a task, especially when you’re a young person who was once active. It makes us feel vulnerable to let others know that we have difficulty doing basic physical tasks. Calling someone “weak” or “lazy” when she is giving it her all is discouraging, so please, please have some compassion and take a moment to walk in that person’s shoes.
Readers, feel free to share your stories or advice in the comments so that we can all learn together.
“Bran thought about it. ‘Can a man still be brave if he’s afraid?’ ‘That is the only time a man can be brave,’ his father told him.” ― George R.R. Martin, A Game of Thrones
Sending you all gentle hugs as we keep up the fight,