The three types of people who don’t believe you’re in pain

A departure area in a Japanese airport.

This is a lesson I learnt very early on in my endometriosis diagnosis. It started when the pain started, I knew something was wrong, but people started to try and explain the pain away.

I’m reminded of it again with the diagnosis of my second condition. Living with people who are not unwell can be exhausting, as exhausting as the pain sometimes.

I explain what living with chronic illness is like when it’s worth it, but on the whole living with illness means picking your fights with people carefully and largely muddling on through everyone else’s healthy status quo.

Here are what I think are the three types of negative reactions to disclosing your chronic illness.

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It’s not me talking, it’s the pain

A cosy cat warming on christmas lights stretches out a paw to the camera.

This is a phrase I hear all the time – from me and the many women I talk to with endometriosis. It’s the phrase I’m crying out in my head when I say something I don’t mean to.

It sums up my frustration really. As we all grapple with the conundrum of what bits of our personality are ourselves and remain ourselves, and what’s caused purely by pain.

Pain is usually all I can think about now. I spend most of my time distracting myself from it and as such it feels like the pain is sometimes in control of how I say things. Thoughts often leap out of my mouth before I can filter it.

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We are not to blame for our long term illnesses

A photograph of an ancient asian scholar in the British Museum.Acceptance is an important part of living with chronic illness. Part of acceptance means realising that you have to put aside your feelings of “why me” aside so you can begin to appreciate what you still have rather than mourn what you’ve lost.

In the first few years of diagnosis (and even after then) many people will approach you upon hearing that you’re unwell with their suggestions for what might help or solve your pain or fatigue.

I still consider it the height of arrogance to approach someone who’s been unwell for years with a simple or quick fix. The reality is that no one really knows the causes of many chronic conditions, so by that logic no one can easily solve the issue without knowing what caused it in the first place. It’s well meaning but sort of implies you’re ill because you’re not doing something right — when in reality, you’re trying your best.

Your illness is more than likely something you were born with, or something that you have a genetic disposition for. You just got unlucky that it was activated at a random point in your life.

You’re not to blame for your chronic illness, and here’s why.

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The problem with “I hope you feel better”

I’m starting to dread these words almost as much as the question “how are you?”. It normally comes not long after I’ve explained how I have a long term illness, how it effects my life and how it’s not likely to improve.

After someone’s suggested something that might help. People tend to wish me on my way with the sentiment “I hope you feel better”.

I know what the person is trying to say, they’re trying to empathise with me and be hopeful about some future improvement in my daily experience.

The problem is though this sentiment is counter initiative to the understanding I have of my illness. Chronic illness is unlikely to improve and can only really be managed by daily management and hardwork. It rarely gives us a break and you rarely experience that lovely, rising sensation of feeling better, of something lifting away.

Despite what the person says, when someone says this to me part of me always feels like they haven’t really listened.

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How to support someone with endometriosis

When I tell people I have endometriosis people are shocked about how common the illness is they feel sad that they’ve never heard about it before. As I start to get to know people more long term the best, and most supportive people around me are the one’s most willing to understand what I go through.

I’m happy to say that I am frequently asked what more someone can do to help me with my illness, but there are still plenty of people who don’t ask, or are afraid to ask, so this update is for the people in your life that could stand how to support you more.

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Are you the youngest ill person in the room?

I feel like I frequently am.

Whether it’s at healthcare events, support groups or consultant waiting rooms. I’m usually the odd one out, the person who is “too young to be sick”.

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It’s easier for you to be ill, you’re ill all the time

It’s time to bust some more chronic illness myths!

I’ve heard this statement from a couple of people now, troublingly from two people I know quite well.

It always comes when talking to me about someone else who is suffering with an acute illness, or someone who has a long term illness that doesn’t present itself as often as mine.

The very idea that I am somehow better prepared for illness because I am ill every day is a tiny bit patronising. It’s as if someone means that because I live with illness every day I am more “deserving” of it as I am more used to its presence in my life.

No way, not by a long shot.

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We are the experts when it comes to our illnesses

I tend to forget sometimes that despite how awful I feel, I look pretty normal to the outside world. Somehow despite feeling generally unwell from day-to-day I am able to hide how poorly I am feeling behind a normal face that everyone recognises. It sounds like a great problem to have, but it is one of the ongoing dichotomies that someone like me with an long-term illness faces. Standing on the line between chronic illness and perceived wellness.

This sentiment of visual normality that floats around me all day might go someway to explain the numerous comments and platitudes I hear from people about how I could cope with my illness better. As when I start to talk about how it effects me, others around me feel that it’s appropriate to share their ideas about improving my lot as if their suggestions could improve my quality of life further.

While these thoughts are well-meaning it’s important to remind people that we are the experts when it comes to our illness.

Besides, all this well-meaning waffle from others does all is marginalize how well we do manage with my illnesses. I am the most experienced person in the room when it comes to my unique experience of pain.

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I complain too much? No, I’m restrained when it comes to my illness

I’ve never had someone come out and say that I complain too much to my face as such. However I get the distinct impression that some people think that I do talk about my illness too much.

It’s actually terrible that these poor, healthy people around me have to listen to so much of my belly-aching right?

Here’s the thing though, the people around me probably only hear about 10% of the difficulty I that I go through and internalise. How awful for them to be so worn-down and exhausted by my occasional complaints about chronic pain. I literally cannot imagine how difficult that must be.

I’m being sarcastic of course, but the point stands.

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I’m not “better” I’m simply managing better

I’ve had a recent spell of good health in the past few weeks. I’ve attributed it to being able to cycle into work so I have a regular, gentle amount of exercise each day.

As superb as that is, all that’s meant is that my pain has been partially replaced with unending fatigue, which I am working hard to manage and balance out.

However there’s no escaping that my recent success has led to some around me wondering and even declaring that I must be feeling better, or even that my chronic illness is cured.

Wouldn’t that be nice? Truthfully though managing a chronic illness is a lot of a hard work and so is keeping your symptoms at bay so you can enjoy a little pain-free time once in a while.

It’s really hard to explain to others that any respite from my pain or fatigue is usually temporary. If I’m making my hard work to manage my illness look easy that’s not happening because that I am better, but because I am managing it better.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.