Does it Hurt? And Other Questions that are Really Hard to Answer
I recently was talking to a good friend of mine who lives with ulcerative colitis, and the conversation turned toward how hard answers can be to seemingly innocuous and easy questions that one gets regularly asked. Questions like, “How are you?” can be so loaded when the answer isn’t “fine.” Questions like, “Are you hurting?” can make me stop in my tracks as I begin counting the places that are talking to me all the while debating how much to reveal because my answer could change the direction of the day if I tell the truth. Questions like, “Do you want to go out to dinner tonight?” should be a “Heck, yeah!” instead of an internal debate about how much my stomach hurts and will the restaurant choice make it worse.
The everchanging nature of chronic conditions
The reality when you live with a chronic, painful disease is that life is more complicated than it otherwise would be. The complications come from the ever-changing nature of chronic conditions and the need to fit that into a life that has positive meaning. So much of my life is a struggle to balance the caretaking responsibilities that my body requires, with the strong desire to live the best life I can. Some days, caretaking is all I do, and on days that I don’t have to think too much about my painful body I rejoice in the ability to live unfettered.
This is a hard thing to convey during casual conversation; considering the definition of “casual conversation,” it really shouldn’t even be a part of one. The problem is, when you are trying to be honest with yourself and the people around you, casual questions can be tricky to answer. Over the decades I’ve lived with JRA, the way I talk about it has changed dramatically. I think because I got this disease before I could speak in full sentences, my instinct has always been to keep most of the issues that challenge me to myself.
But as time went on I realized that wasn’t the best way to go through life. Not only was I making my life difficult by trying to handle everything myself, but I was losing out on the opportunity to teach people about chronic pain and disease. Just because you live with an illness doesn’t mean you have to be an ambassador for it, and there are many days that I don’t feel like talking about the reality of my life. That being said, what I’ve discovered is that when it comes to some of the easy/hard questions, sometimes you can keep it simple and real. “How are you?” can be answered by saying, “I’m much better today than yesterday and really grateful.” Or, “Having a harder pain day today but looking forward to that changing.” “Do you want to go out to dinner tonight? I really do but since I have a stomach ache, I’ll need to eat at a place that offers …., is that okay with you?” “Are you hurting? Yes, today the pain is worst in my elbows but I’m wearing an elbow brace so that should help.”
By answering simply but also with a dose of my reality thrown in, I find that I’m forming deeper connections with people. Sometimes when I answer in this way it does lead to more questions, at other times we just move on. But always I find that I feel better because I’m not hiding, I’m often raising awareness, and I’m connecting more deeply to the people around me.
Have you shared tips on how to manage RA with anyone before?