I talk about arthritis. A lot.
I have rheumatoid arthritis (RA) and ankylosing spondylitis (AS), with bits of osteoarthritis (OA) thrown in for good measure. I often find myself having to explain the ins and outs of these conditions, as well as the differences between them, to get any sort of understanding or support.
Most people are familiar with osteoarthritis, although they may simply know it as “arthritis.” What they often don’t know is that there are more than 100 different forms of arthritis. This “one arthritis fits all” misperception brings out all sorts of inappropriate and unwelcome comparisons like, “My grandma has that” or “So and so had arthritis and they cured it by [insert questionable home remedy here].”
Comments like these make people like me feel frustrated, misunderstood, and unfairly judged. I would love the public to be much aware of the different arthritis forms, symptoms, and treatments so we won’t have to feel like that anymore.
But lately I’ve realized it’s not just about clearing up misconceptions about arthritis among those without these diseases — we also have to examine how we in the patient community speak to each other.
My New Arthritis ‘Family’
One of the best ways I’ve found to help me cope with my conditions is to talk to others who have similar issues.
When I was diagnosed with RA (the other conditions came later), I didn’t know anyone else with it. I got great health support from my doctor and general emotional support from my family and friends, but I wanted to find others who actually understood what it was like to live with RA.
I felt so relieved after attending my first support group meeting. I had found my kindred spirits. People who weren’t uncomfortable talking about pain, mental health, and different treatment approaches. Normal people who I could still chat with about hobbies, movies, and other everyday things.
Since then, I’ve met many more people with arthritis through social media, online support groups, research and focus groups, and mutual friends. There are a lot more of us out there than I ever realized.
Comparing Conditions is Not Healthy
Although I am eternally grateful for my extended arthritis family, I’ve noticed we sometimes have problems communicating well with each other.
Recently I’ve seen several people unused to talking to others with arthritis immediately fall into the comparison trap. After hearing other people’s stories, they’ve said things like “I’m not as bad as you” or “Maybe I don’t belong here, as I’m coping OK at the moment.”
I’ve also seen people be overly dismissive of those who appear to have milder symptoms than they do. “I don’t know what they are complaining about — they can still work” or “If she thinks that’s bad, how would she cope in my shoes?”
Comparing and contrasting symptoms, treatments, and coping mechanisms simply for comparison’s sake doesn’t help any of us. The reality is we are all different. Our conditions affect us in many different ways. We don’t need to add to our arthritis challenges by thinking we are not doing the “right” thing or not coping as well as we should.
Being judgmental of yourself or others leads to feelings like envy or inadequacy. It may also lower your self-esteem and make you reluctant to talk about your conditions to others in the future.
I’ve given this a lot of thought and came up with some ideas of how we in the arthritis patient community can make sure to have authentic and candid conversations with each other without falling back on unhelpful comparisons.
How We Can Avoid the Comparison Trap
Don’t judge by appearances
If you are the one making the comparison, stop and consider what is really going on with the other person. Where are they in their arthritis journey? Maybe someone appears to be coping well because they’ve had their condition for many years and they have reached some level of acceptance of it. Maybe they are putting on a brave face and they are really in a lot of pain or distress. Or maybe they just have a different personality type from yours and they express themselves in different ways.
Instead of framing your conversation around how your conditions or health journeys are different from the other person’s, focus on your shared experiences and what you can learn from the other person’s challenges.
Reflect on your own experiences
If you have only recently been diagnosed, don’t expect yourself to have your sh*t together right away. It is OK to feel scared and depressed if that’s what you are feeling.
If you’ve had arthritis for a while, look back on how far you’ve come. Give yourself credit for getting through all the difficult times and picking yourself back up again. You will probably have a good idea of which treatments work for you and which don’t, so learn to trust your own instincts.
Remember that your story is valid
Don’t let anybody else make you feel as though it isn’t. By all means, listen to other people’s stories, learn from their experiences, and offer them your support as well, but follow your own path and speak up if your needs are not being met.
Let’s all keep the conversations about arthritis going in as many ways as we can. However, let’s do it in ways that show respect to everyone and don’t turn discussions about our shared experiences into pissing contests for whose health is the worst.