Once, when I was 23 and freshly diagnosed with rheumatoid arthritis (RA), I was playing poker with some friends. This was a nightly activity as we commiserated over the gloom of graduating college and not knowing what to do with our lives.
I was trying to shuffle and deal without revealing how painful the simple task now was. My best friend remarked on the perpetual pain in his throwing arm from his high school baseball days: “I never knew throwing like a donkey would have lifelong consequences.” He grabbed his shoulder.
Having just finished four years of college baseball as a pitcher myself, I replied: “It probably wouldn’t hurt to stretch the arm every once in a while.”
He glared at me, like many people do upon being given unsolicited advice. “Not sure I should glean the advice of someone who just got diagnosed with arthritis.”
In that moment, there were all kinds of reactions I could have had. I could have blown up, told him he should educate himself before throwing around dim insults. I could’ve punched him (though with RA, the logic of that option was diminished, much like my body). I could have paused the poker game and gently told him the differences between the two arthritises so that mistakes like this could be avoided in the future.
During this past Arthritis Awareness month, I saw different arthritis organizations post features and interviews with patients. And I think a great job was done at illuminating some of the intricacies and unique challenges of our collective experience.
I’ve begun to feel, however, that our efforts at raising awareness have left our expectations of others unreasonable. For instance, during Arthritis Awareness month I read a post in which a patient wished people knew that RA sufferers still have a sex drive. Another post, from another patient, wished people would call it rheumatoid disease rather than arthritis.
When I read these posts, I wondered:
If people knew we still wanted sex — would our day-to-day life with this disease be eased?
Is it realistic or fair for us to expect this level of awareness?
Sure, I too get annoyed when people bunch RA with osteoarthritis, or when people assume that my RA is a result of a lifetime in baseball, and I especially cannot stand when my athletic trainer friend tells me certain lifts I should try that he knows will work well with my RA, even though he doesn’t know the first thing about it, and I already know the suggested lift would be impossible and say as much. To which he uses the lazy logic: “How would you know if you don’t try it?”
But I think in the spirit of raising awareness, we should take a step back and ask ourselves: Are our expectations reasonable? Do we need to grow thicker skin — or expect less from people? In a time when science and medicine is at its most advanced, there are seemingly endless disabilities and diseases with even more endless symptoms and limitations. It is a lot to keep up with, and I think we could have a more forgiving approach to those who are naïve about our complex condition. I also feel people who are making a conscious effort to help, or be conscious, should not be made to feel guilty.
For instance, I recently read an article about things to never say to people with RA. But I wanted to add some perspective to the writer’s thoughts on these two recommendations of what never to say:
- You look good. I get it. Telling someone they look good is downplaying the severe pain experienced, but it is meant as a compliment, a message of strength and encouragement. Must we strain to find its faults?
- Let me know if I can do anything. Seriously? This is an open invitation to help someone understand the disease on your terms, as well as an open invitation to receive love and support. It is a genuine effort.
As Arthritis Awareness month closes, I think we as patients could consider reevaluating what we want people to know about us, and our disease. What is essential? What is reasonable? What is ignorant for them not to know?
Back to the beginning
So what did I do when my best friend made that bonehead remark? I breathed. I decided to choose another time to enlighten him that wouldn’t put a damper on the night. I forgave and forgot. (Well, not really. I bluffed him on the next hand, and took him to the cleaners).
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Emil DeAndreis is a baseball coach, and an English professor at College of San Mateo. His memoir, Hard To Grip, chronicles his journey of losing a professional baseball career to rheumatoid arthritis. He lives in San Francisco with his wife. Follow along with Emil on Twitter.