We need to talk about chronic pain more

Recently I was sat around a dinner table with some visitors, and someone there was trying to share their experience of living with incurable pain.

This took a lot of bravery to do in such a social setting, and being in pain myself that moment I was listening intently to their story, when someone else quipped that this person was “going on about their pain again” and “no one wanted to hear about it”.

I corrected the person, and explained that I did indeed want to hear, and it was very important to listen to stories of pain, as I lived with chronic pain myself.

Isn’t it interesting that pain forms such a huge part of our lives, but years of societal conditioning has told us that it’s something we have to carry quietly?

I completely disagree.

Some things others could ask

I’m wholeheartedly trying to rewire my brain to disassociate the discomfort I feel (or think I should feel) when I start to talk to talk to other (healthy) people about my experience with pain.

My parents have the right idea, rather than asking me how I am, they ask me how much pain I am in or if I am having a good pain day or a bad pain day. It’s takes all of the pressure off of me to lie about how I am really feeling, and it gives me the opportunity to ask for help if I need it.

I wish more people enquired about my life this way rather than asking the same, inane questions that everyone else is asked. When we’re ill we’re coping with so much more in a day than a regular person, and it would be nice if more people acknowledged the great job we’re all doing by enquiring about my pain, and validating my experience with it rather than helping to bury it.

A lack of empathy

To people living without chronic pain, we must seem like chronic complainers. In my experience though, most people keep the vast majority of their pain symptoms quietly to themselves as best they can. But what’s the big deal about being more open about what we’re experiencing? Truthfully most people who will try to play down my pain or try to move onto another subject are people who live happily without illness or long-term problems, it’s easier for them to try and put the conversation about pain and mortality out of sight and out of mind because it’s not something that really comes into their horizons.

And yet many people will have some experience of either acute or chronic pain in their lifetime. Maybe (if they’re lucky) not until they reach later life. So it seems to be a case of not wanting to acknowledge a problem that they don’t think effects them.

However chronic pain effects everyone, but when you’re young and pain-free it’s impossible to see how.

With an ever increasing (and aging) population this is something we should be educating everyone about (not just the old) something that could become a normal part of life – and crucially – that there are ways to improve your quality of life with pain and how it’s not something you have to put up with.

A recent example

I’m reminded of a time I travelled on a bus and sat in a seat designated for the disabled and someone looked at me once I sat down and said. “You can’t sit there.”

I explained the reasons why I could sit there and the person’s demeanour changed from one of consternation to empathy. They’d assumed one thing based on how I looked and balked when confronted with the reality. That I could look completely normal and be in a lot of pain.

We shouldn’t feel put off about sharing our pain, but we should remind people of how we’re feeling now and again, and in doing so feel confident enough to challenge people who aren’t comfortable when we reject the silence of pain.

If all else fails, I repel the discomfort others try to throw at me back at them. For example people who doubt I’m really ill or doubt my symptoms (like short term memory loss) are real. I talk about my illness in depth to them, I deflect their negativity like a laser beam, I overwhelm them with information and this tends to put them on the back foot with the extent of their ignorance of what I and others manage with each day.

Don’t be afraid to talk about your pain, it only suits the “be quiet, I don’t want to know” agenda of the person you’re talking to.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

9 responses to “We need to talk about chronic pain more

  1. Kerstin Esbjornsson

    Thank you for your blog. Take care

  2. I really appreciate this post. I felt like I recently made a big mistake by telling my employer that I live with chronic pain from endo. I discussed my last surgery where I had my right ovary removed. Her question “why didn’t you have a hysterectomy at the same time”. I didn’t get the empathy that I was hoping for. I wanted her to know that although I am in pain most days, I rarely take days off. I endure for the work day, sometimes just waiting for the end of the day so that I can come home and take pain medication. There are only a few close friends and family that I talk to about my condition. It’s true, no one knows what it takes for me to get through each day. On the outside, I look healthy, on the inside, not so much. Thanks again.

    • Elly, sounds like a similar story to made of us who live with endometriosis pain. Only we can really, truly understand how hard you work and how hard a thing “normality” is to achieve. That said, I think it’s awesome that you’re working with endometriosis, there aren’t many who can. I’ve written a lot of advice for working with endometriosis in my help section if you want some further reading.

  3. I couldn’t agree more. Will be sharing this with my friends and family.

  4. Great post. It’s all too easy to lie about how we are feeling or keep quiet and your point about being conditioned to be that way is very true. I’ve lost count of the times I’ve felt like hell but answered ‘I’m fine’ with a smile when asked how I am.

  5. Reblogged this on Our Hystories and commented:
    Endometriosis leads to numerous women opting for a hysterectomy in order to ease their chronic pain. Here’s a blog that addresses issues of endometriosis.

  6. Ellie

    This post has really helped me. Recently I have been diagnosed with endo and I’m only 15 so I’m still going to school. I have lost a lot of friends because I had to take 6 months off. My mum is always telling me I can’t take anymore days off so she sends me to school and my dad normally has to pick me up early. She just doesn’t get it that some days I just can’t.

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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