Why invisible chronic pain is the poor cousin of physical health

Graffiti in Osaka, Japan, featuring an octopus arm.

I feel like I am in a grey area when it comes to my health, don’t you?

In the UK I hear lots of rhetoric in politics about how mental health needs to be a priority and disabled people with profound disabilities should already protected (are they?).

I can’t help but feel that invisible chronic pain in anyone below 60 is still an elephant in the room that few in politics, media or health seems to be talking about or addressing.

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Why do people in pain turn up at A&E?

Beautiful black and white graffiti from Japan.

I’ve seen a lot of in the press and on social media in the last few years about how people shouldn’t turn up at Accident and Emergency (A&E) for illnesses that are not emergencies.

However I think people in chronic pain or with long term illnesses have been all but forgotten in this rhetoric. I’ve never gone to A&E myself, but I know many people in pain that have, and their stories all share one thing in common – they went there out of total and utter desperation, and I am utterly sick of them being demonised for doing so.

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Why pain free days are weird

Man trying to ride a bicycle with his head bandaged up.

If I had to estimate I’d say that I am in pain 95% of my waking hours.

Most people I know are shocked by this, but pain is my new normal. What’s unusual for me now are pain-free days. I average about four to five pain-free days a year. Not being in pain is weird. Not horrible, just weird. I’m not so much relieved about the pain being gone as worried about when it’ll come back.

It’s something I hear a lot from friends living with chronic pain, but it’s not an area of chronic pain many people talk about.

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Getting a diagnosis of a second long term illness

Everywhere I experience chronic pain.

Everywhere I experience chronic pain. Endometriosis in red and JHS in purple.

Earlier this month I got a letter from a rheumatologist confirming that I had Joint Hypermobility Syndrome (JHS). This is the second long term condition diagnosis that I’ve received. My first was my diagnosis for endometriosis in 2009.

It didn’t really come to a surprise for me to discover I had another long term condition, because I’d been experiencing pain that didn’t quite tally with endometriosis for quite some time (almost two years). However it was getting worse and I didn’t know how best to manage this new type of pain.

Not everyone with one long condition will go on to develop a second or third, but some of us do, and I know what you’re thinking, “I can’t manage with one long term condition, how could I manage with two?”.

It’s rather like your first diagnosis to be honest – you don’t have a lot of choice in the matter.

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Why don’t more women have smear tests? Because they really, really hurt

Last month, I replied to a tweet by @talkhealth asking why more women didn’t take up the offer of free cervical smear tests.

I pointed out that there was a very simple reason why one in five women don’t go for a regular smear.

It’s because smear tests can be immensely painful, especially if you have something like endometriosis. I expect that a lot of women are suffering in silence, or find the very idea so painful (due to past experience), they can’t bring themselves to even go.

Having personal experience of truly agonising smear tests that I’ve wept through, I really can’t blame them.

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If you’re in pain all the time, why don’t you just take painkillers?

Every so often something will happen to make you review your current treatment and circumstances.

For me it was a series of heart flutters and painful heart palpitations as I tried to work a couple of weeks ago. As people with long term illnesses we have to way up our current quality of life with pain against our long term health all the time. It’s done thing that most people take for granted, taking medication that simply works in the short term with no ill effects.

I’ve had a number of people this week (people who know me fairly well) no less ask me with genuine sincerity:

If you’re in pain all the time, why not just take a painkiller?

In their world maybe pain = painkiller is a simple no brainer, but it simply isn’t always like that in mine.

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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.

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Talk to us when we’re in pain

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.

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Endometriosis is so much more than just “bad period pain”

It’s rare that I will come across someone that knows what endometriosis is. Which is pretty shocking considering it effects an estimated 1.5 million women in the UK alone.

Others tend to hear about it because they know someone else that has the disease, and therefore I see it most commonly explained back to me as just “bad period pain”.

This marginalisation of endometriosis as ongoing (and linking it to what is implied to be unreasonable) bleating about menstrual pain, does me and other sufferers of this serious chronic pain a great disservice. To be quite honest this over-simplification of what endometriosis is has to stop.

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Pelvic pain is still a great big taboo

My endometriosis diagnosis was not the first time I had been told that I would be sick for the rest of my life. I have a vivid memory of my first sex education lesson aged 11, where I was told that someday soon my periods would start and I would be sick and in pain every month until late in life.

I remember feeling very betrayed by everyone around me for keeping this secret hidden. I remember being furious and upset that this was dumped on me from no where. It felt like a really strange, secret burden that women took upon themselves to conceal from a younger generation until it was time.

It took many days until I felt able to face my fear about this impending illness and talk to someone about it.

I couldn’t understand why if it was so normal they felt it was appropriate to take only the girls in the school, hide us away in a small room and quietly break the news to us there.

It didn’t seem fair.

It still doesn’t. Because as soon as my periods did start aged 14, I realised something was wrong. That the pain I experienced wasn’t normal, and the same secret platitudes were used by every adult I spoke to about it (as in that classroom) to placate me for many years – when I knew something was wrong.

Funnily enough, getting a endometriosis diagnosis often means pushing back against this status quo, to find the root cause of pelvic pain.

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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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