Going It Alone: The Loneliness of Rheumatoid Arthritis
Living with rheumatoid arthritis is an isolating experience on many levels. Putting words into the many ways your body hurts can be more difficult than trying to get people to understand, which means that often we are silently hurting during events we share with others.
Sitting at parties with throbbing knees as people laugh all around me, going out to dinner trying to keep up with the conversation even while I’m so exhausted that I can barely think, let alone speak, have been all too common experiences for me during my life. There are many unsharable aspects to living with chronic illness.
Enjoying my own company
As a kid, I decided that being alone in a group of people was much more lonely than actually being alone. I became really good at enjoying my own company and I still do, a skill I realized has helped me a lot throughout my life. I’ve had many solo hobbies that keep me smiling, even if I’m having a really bad arthritis day. And I know that without JRA, I probably never would have discovered how much I love writing, painting, and puzzles among other things.
Being alone has never scared me
In college, when my friends were out until the wee hours at parties, I was often visiting an elderly aunt, and in bed at a much more appropriate hour for someone in severe pain. Or I was studying, which helped my GPA, if not my social status. I knew that college wasn’t life, and that being okay with my circumstances by liking my own company would serve me better than trying to fit in. As I continued through life, being alone has never a been scary, or negative experience for me.
Isolation, a different type of loneliness
But it stings when I can’t go to something that I really, really was looking forward to and wanted to attend. Like yesterday, when I was actually in the same area as my nieces for the first year since they were born, but due to my immune system, I had a cold and had to sit it out. Those alone days and nights are very tough, and even though this isn’t my first rodeo when it comes to sitting things out, I’m definitely not a good sport about it.
Will I ever be able to change this reaction?
I torture myself with resentment, rail at my fate, feel like I’m a huge disappointment, second-guess my choice, and generally make myself miserable for days after this happens. I’m still wondering if I’ll ever be able to change my very unhelpful reaction, but have come to the conclusion that this emotional pain is just another type of pain that I’ll need to live with.
The forced nature of isolation
Unlike being alone in general because of my body’s need for extra rest, something that I plan for and factor into my life, this type of alone is forced onto me against my will and is not under my control in any way.
Cultural milestones versus more meaningful moments
Knowing intellectually that my life with JRA has meant that I’ve missed out on cultural milestones like prom, college parties, or a career path is easier for me than missing out on my nieces’ birthday party or a spontaneous bike ride with a friend. The fact that I don’t rail at not being able to have children of my own, but instead rail at a dinner party I’m missing, makes me scratch my head.
I don't want to feel like a victim to RA
But then, I realize that it’s safer emotionally to do it this way. If I take the time to list and really think about the big losses I’ve suffered because of rheumatoid arthritis, I would feel like a victim, and I’d be inviting depression in. Deep down I know that my nine-year-old niece was disappointed for five minutes that I didn’t show up, but then happily ran around with her buddies Halloween night. I know that there will be another dinner party to go to, another bike ride to take.
Not wanting to focus on the bigger, sadder things I've lost
Maybe, by allowing myself to get angry and depressed about missing out on these temporary, repeatable events, I can use up some of the deep sorrow I feel, but don’t allow myself to really focus on, about the bigger, sadder things I’ve lost.
Emotional pain is as real as physical pain
The bottom line is that the emotional pain of rheumatoid arthritis is just as real, and just as bad, as the physical pain. And just like trying to figure out strategies for the physical pain I feel, I’m starting to ponder about emotional strategies that work. The first step for me is to notice when and what I’m feeling, and then try to get to the why.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?