Concealing the pain

“If human beings don’t keep exercising their lips, he thought, their mouths probably seize up. After a few months’ consideration and observation he abandoned this theory in favor of a new one. If they don’t keep on exercising their lips, he thought, their brains start working.” — Hitch hikers guide to the galaxy

“How are you?” my friends ask. It’s a standard thing to say, a social convention. It’s a convention I find incredibly difficult. I can respond with a lie, of course. I’m almost expected to. “I’m fine!” or “Not bad” will fill the gap in the conversation and allow us to move on.

But I’m not fine. Those days I call a good day? I’m still more sick than a healthy person can imagine.

I say I am recovering, and I am. I am much better than a few weeks ago when I could not get up from my bed, could only lie there crying with pain. Now I can get up, sit in other parts of the house. Last week I even went for a ride on my motorbike! But yesterday when my sister came over for a coffee I nearly fell over after opening the door. I staggered away and managed to stay on my feet by grabbing the walking stick that I keep next to the door. Sitting on the sofa as my sister made the coffee, I was firmly told to stay sat down every time I tried to get up to do anything, because she knew just how ill I was.

A couple of days ago some friends came to visit us and stayed for 90 minutes or so. To begin with, I looked normal. I told them how I was feeling better, how I was improving. Half way through their visit, I got up to get something from my bedroom. I was unsteady on my feet, so that the second time I went to get something I was told not to bother. By the end of the visit, I was very visibly exhausted. Barely standing, face contorted with pain and fatigue. My friends concern was obvious.

Those two examples aside, who else would know what I go through? How would anyone see what I look like when so sick? I only go out when I am feeling good, so others will only ever see my absolute best and most healthy points.  If they don’t come round when I am struggling in the morning, if they don’t spend 90 minutes with me until I am completely drained, they will just see a healthy person. I compound the problem by telling others that I’m fine or that I’m not bad, so they have it by my own admission that there is nothing wrong with me.

I highly recommend this blog post by Sue Marsh – The Sickie Friend Slam-Dunk. She explains how even people that see some of her struggle still judge and condemn her. I put it to you that if you know someone that says they are sick, that you don’t know the half of it. You have no idea what they go through when you aren’t looking. You don’t see them crying out in pain, falling over, failing to get to the bathroom in time, the mountains of pills that they have to take. Don’t judge based on what you see. And next time someone says “I’m fine!” just have a think about what they really mean by that.

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

5 thoughts on “Concealing the pain”

  1. I totally agree with you on this I am the same I hide alot of my pain too. I have hide mine over 20 years friends do not know half

  2. yep that about sums it up. And when people do see you when you’re not great they often feel guilt. this can then manifest a running away response or a total denial of the situation. True friends will at least try to understand and admit they can’t fully comprehend what you are going through. it’s funny my disability is probably more outwardly noticeable than yours and much easier to accept (spina bifida and cancer are words that can strike a cord with people) and even THEN, even though i need sticks to walk, that i can lay on the floor and calmly explain i can’t move my legs or all my nerves are being stimulated so i’t imposable to actually be in more pain from the waist down, even then people say the forget I’m disabled. I can’t imagine what it must be like suffering from a ‘hidden’ illness.
    anyways when people ask me how i am, if they don’t know me i say fine, if they sort of know me i say ‘mnatlly i’m fine/great, or ok in myself, and my true mates, i’m just honest. take care mate *HUG*

  3. I too hate the phrase “how are you” You are forced to say you’re fine because people just don’t want to hear the other side. It’s just not the done thing. Never mind the fact that the only reason you have been able to get out and about is because you’ve just swallowed half of your local pharmacy!

  4. I’ve found little ways to avoid lying or causing social issues when asked ‘how are you’. Half truths that still tell people there’s a problem, like “better than I have been” or “surviving”, or answer relative to my baseline – “good” means better than usual. It depends who asks and how. Sure, it isn’t as honest as I’d like (I am very serious about honesty), but it gets things done without too much misleading.

    However, the problem is when ATOS ask you this conversationally at the start of an assessment (or any similar situation). Then you have to answer relative to a ‘normal’ person’s normal.

  5. I learned a long time ago to say “It’s nice to see you.” Oh how I wrestle with the “How are you’s” too! My dad came up with a poem in response to how are you – How am I? My heart is fine but not so my bamboo spine. He had crippling anklylosing spondylitis that put him in a hospital bed the last 4 hears of his life but his humor I remember every day. The only problem with his response was that he died of a heart attack –

    I stick to, “It’s nice to see you.” LOL

    nina

Comments are closed.