Here’s a thing: expecting others to know we’re in pain if we don’t tell them.
Here’s another: feeling frustrated or angry with them because they don’t.
How can they know we’re in pain, though, when we actively do our damndest every single day to hide our pain and cover up any disability? When we smile even though we feel like utter kaka? When we power through our fatigue like a hamster on crack? (OK, I exaggerate. Sorry.) Is it any wonder that our hapless friends and family don’t say “Here, honey/Mom/buddy, why don’t you sit down and rest? I can see you’re in pain/exhausted. Let me do that for you!”
Yes, I know. Sounds like heaven.
Have you done this? Have you had to literally bite your tongue to keep from saying “duhhh!” dripping with sarcasm, when your significant other finally, finally says, “Are you hurting?” And when you admit that yes, you are hurting--a lot--and in fact you’re pretty sure your knee is going to explode any second now, and they say “But you didn’t say anything!” in that hurt, half-angry, accusatory tone, you get even more frustrated than ever?
I hate to admit it, but I have. Because, come on! Can’t they see that I’m in pain/fatigued/utterly miserable? They do know that I have this crap disease, right? Right?
Whoa, baby! Time to step back, take a deep breath, maybe say a few ohms and dial back that ragey stuff. [pause] Done? Good. Me too.
There are more frustrating things about having rheumatoid disease than I can count. But way up there at the top of the list is the Inability of Others to Read My Mind. I can never figure that one out because I can usually read theirs.
I can explain.
Twenty years ago, “Deanna Troi” on the TV series “Star Trek-Next Generation” was one of my favorite characters. An “Empath,” Lt. Troi was able to “feel” the emotions of others and respond to them in a way that made them feel acknowledged, understood, and supported. She was an interesting character, one that got me thinking every time I saw her.
I can’t actually read the minds of my friends and family like a creepy telepath--and ugh, I wouldn’t want to. But who knows? I may have an interplanetary alien somewhere, way back in my ancestry. (I can hear my husband chortling. This would explain so much!) Seriously, now. Since I was a child I’ve been able to pick up on people’s emotions easily--and without them telling me themselves. I know I’m not alone in this ability. A lot of woman do it intuitively. Maybe men do it too, but I’ve never met one myself.
Both feet firmly on terra firma, I do have a very strong sense of empathy. I’ve amazed friends, family, and colleagues by knowing how they were feeling--either emotionally or physically--without them actually cluing me in. I don’t know how I do it, exactly. People send signals with their bodies, I think. Sometimes it’s the tilt of a head, or a tone of voice, or the even the way they word things--or don’t. It’s not foolproof. But it is helpful sometimes, and I’m glad I can do it now and then.
All of which is a roundabout way of complaining about my frequently clueless family and friends. I know they love me as much as I love them. Why don’t they know when I hurt? Why do I have to admit my weakness, my fear, my uselessness, and tell them myself?
Uh-oh. I think I just got it. It’s because I hide my pain--and I’m really, really good at it. If you have rheumatoid disease, I bet you do it too. We all do, or at least we all try. Why?
We do it to protect ourselves. It’s instinctive. Most cultures perceive people who are mentally or physically ill, disabled, or very old as weak unless they’re children. That’s different--our instincts are to nurture and protect children, who are naturally weak because they’re so young and represent the future of the species. But weak adults are a problem. They slow everyone else down. They need extra help to live. Healthier individuals might use those resources better.
This isn’t anything overt, and most of us recoil when confronted with it. It lives deep, deep down inside our primitive, animal brains. Hurting someone who’s already ill or injured is the last thing we’d want to do. But in a tribe, the weak can make the strong more vulnerable. They have less value.
Allow me to stress here that these are all just my own musings about how things work in life. I could be wrong, and I’m always open to discussion. But I do think this applies when it comes to hiding our illness and pain. We’re protecting ourselves.
By pretending to be well, by pretending we’re not in pain, or fatigued, we’re showing ourselves to be useful members of the tribe. As such, we deserve the perks of membership--status, shelter, respect, even food. A healthy member of the tribe can’t be willfully ignored, shunned, or worst of all, attacked by others. And this pretension, this hiding of weakness, is a skill we hone throughout our lives.
So, here I am, an adult with rheumatoid disease. It makes me weak and sometimes unable to function the way healthy adults do. There are times when no matter what I do, I can’t hide the ways it affects me. But if I can, I do it without thinking. And I’ve been doing it so successfully, for so long, no one knows I’m pretending.
There’s a way to fix this problem, of course. All it takes is a conscious effort to override instinct. At the beginning of the second millennia in most of the Western world there’s no need to hide illness from our tribe. In fact, hiding it means we won’t get the help for it that’s available now. Modern medicine cure some diseases and treat others to the point that you’d never know an ill person from a healthy one. And our social mores have changed as well. We no longer need to fake toughness for acceptance. In most families, having a chronic illness isn’t an embarrassment. Our friends and family want to know what’s going on with us. They want to help us, they want to care for us, and most of all, and they want to love us.
I’m working on not hiding how I feel anymore. I’m also working on not feeling ignored or uncared for when my family doesn’t seem to notice I’m sick. I tell them. I’m still struggling with feelings of inadequacy because of it, and it still embarrasses me sometimes. I’m a product of my culture, after all. But I’m getting a whole lot better at ohmmming myself into calmness and loving acceptance. Rage is just too exhausting. Love feels a lot better.
And while empathy is a good thing, if I’m smart I’ll stop expecting it from anyone but Lt. Troi.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?