RA: The Trouble With Talking About It
Over the course of my life I’ve had a lot of aha moments come from the most unexpected places. Recently, I was watching the show, “Chasing Life,” about a young woman who finds out she has cancer. She was struggling to figure out how to tell her friends and loved ones, discovering as she told people that she had to handle their reactions and was worried about how her relationships would change. All of this is very familiar territory for me, as I’m guessing it is for most people living with chronic diseases like rheumatoid arthritis. The minute someone learns I have juvenile rheumatoid arthritis the dynamic shifts. Often I will hear advice about how to treat it, or stories about other people with the disease, or I’ll hear about how my companion has it too and how bad it is for them (always when they are mistaking osteoarthritis for RA.) Almost everyone will tell me how sorry they are. It’s always a bit uncomfortable which is why in the past I avoided the conversation as much as I could. But eventually, anyone who becomes close to me has to know, and avoidance is never a good strategy when it comes to living well with rheumatoid arthritis.
When RA ceases to be invisible
These days the conversation happens pretty quickly because my JRA is no longer that invisible. After the first reaction occurs I try to steer the conversation towards the positive because I don’t want to seem like a victim or someone who needs sympathy. The hardest part for me when talking about my JRA is the fear of how the other person will handle the information. It’s hard to appear like a strong, vibrant person under the spectre of a chronic, painful disease, especially when you are being treated with pity or infantilized. Yet these are the most common reactions I’ve dealt with over the years, and I have yet to come up with a sure-fire way to ward these reactions off.
People living with RA are resilient
The irony is that people who live well with RA are some of the strongest people on the planet and we are so often treated like children who don’t know how to feed ourselves or how much rest we need. The infantilization that unexpectedly comes with a diagnosis of RA is hard to completely ward off for me because I’m always trying to learn more about the disease so that hopefully one day I’ll achieve remission. So when someone starts to tell me about how their cousin switched to a paleo diet and his symptoms abated I’m going to listen and ask questions. The problem with this is it makes me appear as if I don’t know as much as the other person who now feels as if they should constantly give me unsolicited advice. I’ve even had a well-meaning friend tell me that my lifestyle causes my JRA and if I would only eat a raw food diet I would be cured. This happened when she bumped into me at the grocery store and saw what was in my cart, which, for the record, was filled with anti-inflammatory foods. On days that I’m feeling good about how I’m doing physically I can handle these kinds of interactions with aplomb but when I’m feeling vulnerable this kind of advice always makes me question myself, anxious that I am doing something wrong. This then ends up putting me into a vicious cycle of vulnerability—unsolicited opinions from others—anxiety—more input from others—resentment on my part—pity or frustration of others—vulnerability. The only way out of this for me is to distance myself from the other person until I feel my composure and self-confidence coming back.
I doubt that my experience is unusual. Often, I either feel like a martyr or a pitiful creature that needs to be taken care of, and of course I am neither of those things. I don’t want to be told what a poor thing I am any more than I want to be told how strong I am. I just want to be me, someone who lives with pain as best as I can, someone who tries hard every day but some days doesn’t have the energy to do much but handle it in the moment. I often wonder if it is possible to talk about chronic disease with someone who doesn’t have it without being infantilized or pitied.
Communicating with others about RA
Reacting to other people’s reactions when you tell them about your RA in a way that doesn’t make either one of you feel worse is a skill that I’m still learning. I’m also learning how to talk about life with JRA in a way that doesn’t invite advice or direction. But one thing I have learned well is who to surround myself with on a daily basis.
And that is where my aha moment comes in.
April, the young woman in the show, was talking to a friend who had been living with cancer for awhile, and he offered her some advice. “Surround yourself with people who can handle it,” he said. I stopped the show and wrote down his words.
Surround yourself with people who can handle it.
Those words made me really think about the people I’ve surrounded myself with over the years, and I realized something. The hardest times in my life have always been when I was feeling alone- and I don’t mean I was alone during those times. The loneliest feeling comes when you are surrounded by people and still you feel completely alone. Right now, I’m happy to report that I’m anything but alone. I’m married to a man who also lives with chronic pain, and my close friends are happy to let me be the driver of my own life; they know me well enough to know that I’ll ask for advice if I need it, but most of the time I do just fine on my own. I know that they can handle it because I feel comfortable saying that I’m having a bad day confident that the response will be concern, not pity. I know that they can handle it because I still get invited to activities and if I have to cancel at the last minute, there is disappointment but no drama. And most of all I know that they can handle it because when I’m with them, the JRA comes along for the ride, and sometimes it means I have to make adjustments in how and when I do things, but it’s no big deal, adjustments are made and off we go. Just the way I like it, and that sure feels good.