Listen More, Compare and Apologize Less

I have been told, “At least you don’t have cancer.” While I am thankful that I do not have cancer and understand the sentiment behind the statement, I disagree with comparison. I disagree with all disease comparisons. My mom is a cancer survivor and my great-aunt died of cancer. It’s a horrific and terrifying disease but, not comparable to RA at all. I don’t believe there is a rating system for disease and hate the game would you rather die from this or that. I couldn’t imagine ever saying to a cancer patient, “at least you don’t have RA (or anything else for that matter).”

Initially, while in agonizing pain, I had a flood of frustrated thoughts: Good thing I don’t have cancer! What a relief! I feel so much better! I have no end date to the pain destruction of my body. I am not terminal and there will be no remission. I am told I will be on chemo for the rest of my life. Though I am slowing the progression with poison, my body will continue to attack itself and will get progressively worse as I get older. While death is possible, from a variety related causes, it seems more likely that I will just become crippled to some degree instead. Well, that all just sounded nasty and unhealthy! Comparisons can lead to ugly things!

This brings me to the point of this post, which is the strange responses we all have to illness. I don’t advertise that I have a disease but, certainly tell people if they ask why I am wearing braces or limping. I like to think of it as education and that maybe it will help people not judge those who are not visibly diseased. Despite my want to educate, it always inevitably becomes awkward. It seems that we live in a culture of people who have no idea what to say. I know I am guilty as well. Where there is the lack of words comes a flood of comparisons or apologies. The common responses are: Oh, my (insert grandma, dad, mom) has arthritis, have you tried (insert random joint infomercial), I’m sorry, I hope you get better, or a combo of the stated. On the other hand, for example my husband cuts his finger, he feels guilty complaining about his pain. That’s just silly! We all have pain, it’s not comparable, and that should be okay. I think the purpose is communicating. It is such a healing tool. When I stub my toe, I want to bitch and moan! I certainly don’t want to say- man, my RA hurts so much more than stubbing my toe!

On a related subject, with some friends, I notice complete avoidance of the subject. I’m not sure if it’s denial, fear, or avoidance because of not having the right words to say. The thing is, I can fear my illness but I can no longer deny it and be silent about it. I have hurt for years, not really talked about it, and it now feels therapeutic to talk about it. I absolutely do not want pity- that would make me pitiful and I am not. I am strong but, don’t want to pretend that this is not part of my life. I wish that it was not so awkward and uncomfortable to hear. I know it all stems from a feeling of helplessness or lack of words. Sometimes, shhhhhh and just listen.

Through this, I hope to take my own advice and be a better listener for my husband, family, and friends. I will be more conscious of comparisons and apologies and make every attempt to not do so. I think more than anything we all just want to be heard and sometimes response as simple as a nod of the head or simple verbal acknowledgement is the perfect sound. On a good day, a gentle hug does the trick too.

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