So many times now in the past I’ve found myself surrounded by people when I am in agony, and not one person has stepped forward to talk to me, even if it’s a half-hearted attempt to ask if I am okay.
Such a snub from those around me (who know I am ill and consequently know how much pain I am in) cuts me deeper than the pain ever could.
Here’s an idea, rather than trying to ignore the obvious pain of someone who’s chronically ill, why not talking to us?
About what? About literally anything.
You’re making things worse by trapping us in silence
It’s really important that those around us step up to keep up the dialogue around us. When we’re struggling with pain, conversation is an important lifeline back into the world. Engaging us in conversation about something means we don’t feel quite as isolated and panicked as we do in the worse throws of pain. Involving us in the positive distraction of conversation really does help.
If someone has chronic pain, then pain is a near permanent presence in our lives. We live and work with this pain by distracting ourselves from it, despite the pain wanting and needing our constant attention. Without distraction it’s all too easy to be reminded of pain’s interference in our lives.
I do my best to explain this to people around me when I am feeling unwell. How leaving us in silence easily throws us into the arms of despair that pain aggressively tries to lull you into.
So when someone asks me if there’s anything they can do I always point out that I will let them know if I think of anything, and in the meantime they should just keep talking to me.
It really doesn’t matter what you talk about
Think about something to talk about, even if this seems impossibly hard. It can be something related to our pain (like asking if we’re okay, or what the pain feels like). I personally never tire of asking questions about my illness (because the occasions where I am asked are so rare) so I doubt that you’ll offend anyone with enquiries as long as they are polite.
If someone does genuinely want some quiet time, they’ll say so, but that’s no excuse to not try it again another time just because it didn’t work on a particular occasion.
Even if you talk to us about something that’s really flippant, the distraction is really important, the communication and the involvement of the conversation gives us something to focus on and takes us out of the moment of pain, even a little. Sometimes the smallest relief from illness is all that we need to get through the worst of its effects.
It helps us to realise that we’re not on our own, and that people around us care about what we are going through. This is crucial because when we’re feeling at our worst we tend to shutdown communication channels, as our bodies and our brains are so focussed on working on the pain that it becomes harder to instigate such conversations ourselves.
Humour usually works well in these situations, you should have a sense of what what your friend or colleague should find funny, and if you can get them to a point where they can relax or maybe even smile a little that will always help them cope with the pain more appropriately. Laughter and amusement are fantastic solutions to pain, and it’s completely free and natural pain relief.
Conversation may be one-sided for a bit
It’s a big ask I know. However trying to start or hold a conversation when you’re in pain is very hard work so a conversation may end up being more one-sided than usual. This is perfectly normal, and most people who are in pain will realise what someone else is trying to do for them and make a genuine effort to continue. A conversation may end up being more laboured than normal as we try to push back the pain and fumble for the right words, but I assure you any efforts are appreciated.
We’ll remember the moments where someone makes an effort to make us more comfortable when we’re finding things hard. Equally, we’ll remember those moments where no one stepped forward to help, so bear that in mind too.
Avoiding giving support at the wrong time
What’s more common is for people try to make up for things after the fact. Asking if I am better, or chatting to me more. This is another smack in the face long after I’ve composed myself or perhaps recovered from pain. It’s an acknowledgement that someone knew that I was in pain, and stood by and did nothing.
The bottom line is we need your support when we are struggling, not at a time that is more socially palatable for someone else. Talk to someone when they’re in pain and it’ll help them in some small way to be okay. It can’t hurt, and I’m willing to bet it’ll make a big difference to the person involved.
The prison of silence which others build up around us makes mme want to scream sometimes.
I know, that’s part of the thing I want to empower people to dispel, it shouldn’t be left to us to struggle on alone.
Reblogged this on Words By Mara and commented:
Absolutely true and inspiring post by EndoHope. It breaks, yet touches my heart knowing that I am not alone in this chronic pain journey. Thank you for sharing this!
Reblogged this on crazyinpink and commented:
Made me think of so many times when I wanted someone to talk to me. So important to have distractions. Excellent post!
This is a really great post and I wholeheartedly agree, but there is one small comment I have. When you said “pain wants and needs our attention” it really stuck out to me. I’ve been reading this blog called “Sunlight in Winter” and she goes into more technical detail of what I’m talking about here, but a lot of time attention actually makes pain worse. Pain is a reaction in your brain, even though we think of it being in our pelvis. But really, the pain is technically in your head. Without a brain, you wouldn’t feel pain. In chronic pain conditions, there’s a lot of self training you can do to negotiate with these primal reactions. I’ve tried it and it works. When pain flares up, stop and think. Am I in danger? Has something happened that is threatening my life? Is it just a flare of endo? Okay then, brain, listen. I know there are adhesions in my pelvis. That’s bad and I’m working on it. Please be a little “quieter.” Intense pain is a “loud” signal to you that something’s really wrong. But calming down, taking deep breaths, and actually logically analyzing the situation can help quiet the pain and provide some relief. NOTE: Your pain won’t go away or anything. You still need to take meds, but even then you can think to yourself Look self, I’m taking a pill. It’s going to help. Stay calm. Worry and jumping to conclusions can maximize pain while simple relaxing techniques can minimize it. Anyway I know that’s not exactly what you were talking about, but it made me think of this and I thought I’d share it.
I completely agree actually, thank you so much for sharing that added insight. Great advice 🙂
Living with pain has been so hard. everyday I feel like someone has beat my Backside on my pelvis with a baseball bat. I hurt so bad all the time. I take pain meds but they just dull the pain. Sometimes I youtube meditation videos when my pain gets really bad. It helps. I’m glued to a heating pad and feel like I’ve lost my life. I feel so bad for my husband. I’m not the same person I was 5 years ago…. Just feeling down and in too much pain normally I’m so positive. Just needed to vent
That’s okay Jane, perfectly understandable. Everyone’s experience with pain is different but to take a look around my website because some of the things that help me might help you too.