How Do You Talk To Others About RA Pain?
Does that sound familiar?
That’s the trope I use when almost anyone who is not chronically ill asks me how I am doing. Mainly I say it because I know that they don’t really want to hear how I actually feel, and if they did, they would realize that I am in pain all the time, and expressing that would get old fast.
So rather than point it out any time I am in pain, I never point it out at all. I lie by omission. And I will admit that talking about pain, or not talking about it, may be as much of an issue because I make it an issue, as it is about the way other people react to hearing about it.
In some ways this works, and in other ways it doesn’t. It keeps me from being vulnerable and admitting to others that I’m in pain. But it also keeps people from understanding or trying to understand what I am going through.
So am I trying to protect the people around me, or am I trying to protect myself by not putting it out there that I’m in pain?
I have to admit, I can be pretty cranky when I’m in pain. I also tend to contract my body into a literal fetal position, with my arms crossed and my joints pulled as close to my body as possible. Many people, not knowing I’m in pain, may view me as being aloof or closed off.
I recently told someone about how much better my life was since getting a cortisone shot in my hip for bursitis, secondary to my arthritis. I never realized how much the pain in my hip was contributing to my overall level of pain and discomfort. The person responded by telling me that they didn’t realize I was in pain. I told them that I am basically in constant pain, but that I don’t really tell anyone about it.
I was so tempted to walk up to random people and tell them I’m not in pain anymore. That’s how much different I feel. But telling people I’m not in pain inadvertently tells people that most of the time, I am in pain.
Other people have noticed though. My therapist told me I was smiling more and looked more relaxed. Some friends who haven’t seen me in a while have made similar comments, that I look lighter. I wonder what they thought was going on with me in the past, if they’ve noticed such a distinct difference. Maybe they thought I was depressed, which, given how much pain I was in, I probably was.
And what would they do if I did express my pain?
Maybe I don’t tell people because I think they won’t understand. I don’t really think that anyone can know and understand what it’s like to live with this disease unless they have it themselves. And I wouldn’t wish that on my worst enemy.
So what is the best way to have an open and honest, but not "too much information" kind of conversation about pain?
With our doctors, we talk about pain in a scale. We talk about pain in amateurishly drawn pictures of cartoon faces that don’t really come close to resembling anything human. Clearly the pain scale falls short for most of us in truly describing our pain, especially considering that for many of us who live with chronic pain, we develop high pain thresholds. So we aren’t even the most accurate judges of our own pain.
How do we bring people into the fold? And if we do bring people into the fold, will they want to run away?
When we talk about pain, we use metaphors. We use analogies. We grasp for straws"and words. We try to spare other people pain by not sharing our own. And really, it is only in our suffering that people can really understand each other.
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Leslie wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).