Mind Reader

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.

 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • janlorraine
    3 years ago

    Occasionally my husband will say, “All you do is lie in bed.” This hurts so much because it makes me think that he doesn’t understand how hard it is some days just to get up much less do anything or go anywhere. Besides it isn’t even true though it may seem so at times. And, yes, I try to hide how awful I feel when he is home; I force myself to have dinner ready but immediately after the kitchen is clean, yes, I go to bed; I have to.

  • Robin K. Blum
    3 years ago

    Good column Wren. It’s so frustrating to expect friends & family to realize the extent and continuity of our fatigue and pain. But we never forget as we’re experiencing it most hours of most days.

    And I gotta agree without you on the men and empathy thing. They haven’t quite mastered that skill as yet.

  • Sue Ervin
    3 years ago

    I agree with your theory of why we hide our pain. There is nothing that makes me feel inadequate more than not being able to do basic things. I think it is worth it sometimes to push beyond what we feel like doing if it is an activity we love to do with people we love. I often do feel the price I have to pay for the time spent with family camping, for instance. I will not however sleep on the ground and the last few years I prefer the camper to our tipi.
    I also have been irrated that people don’t help me with things. The reason they don’t is often because I’m like a 2 year old “I can do it”; I want to be able to do it, and hate that I need help.
    If I quit hiding how I really feel from others and denying it to myself, I will be a knarled up old woman in a wheechair So I think to some extent it is good to put on the smile and push forward. My doctor told me if I wasn’t so hard headed I would be in a nursing home, that was 8 1/2 years ago.

  • Jillian S moderator
    3 years ago

    Philanthartist,
    Thank you so much for reading our article as well as our other member’s comments. There is a lot to learn from one another and it is always nice to be reminded that we aren’t alone.
    Guilt is a common feeling that many people don’t openly discuss. I thought you might find this article on guilt helpful and easy to relate to.
    I truly hope you enjoy it.
    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • Philanthartist
    3 years ago

    I was going to ask : “why DO we hide the pain?”

    Then I read the 3 posts already here and got some great answers. My reason: GUILT. About all of it!

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