So how do we keep going?

I wrote in my last update about how important it is for others to keep asking questions about our chronic illness, to give us the opportunity to share the details and difficulties of our illness.

Well today I want to talk to you about the most frequent question I get asked when someone realises I am chronically ill.

How do you cope?

That’s easy I say, I don’t have a lot of choice in the matter.

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Instead of silence, ask someone with a chronic illness lots of questions

If I decide to share the details of my chronic illness with someone, the worst thing that someone else can do is respond with silence.

Many of us weigh up the decision to keep quiet about how hard each day can be – but it tires us – it weighs us down slowly, and the knowledge that this illness will never leave you bores into your mind.

So keeping silent when you ask someone how they are and they take the decision to answer – that denies the person who is unwell from sharing further information with you. It makes them feel guilty for trying to lighten their load.

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Learning to manage people’s expectations when you have chronic illness

The hardest concept to explain to people about endometriosis is the fact there’s a good possibility that I am not going to fully recover.

I have come to terms with this, in fact chronic pain management generally concedes that you will experience some pain going forward, and never be completely rid of it. However societal norms make the aspiration of “becoming well” the overriding goal of those around you.

This is because acute illness (illness that has a beginning and end) forms most of the understanding of an averages person’s understanding of illness.

Cruelly some can even relate to terminal illness better than chronic illness. There’s a arc to the illness that makes sense – that is finite.

As such as I hear many of the same platitudes I tend to hear time and time again from people. I want to talk to you very matter of factly about what I think about each of them.

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Why you should forgive the fit people in your life

Living with a chronic illness means letting a lot of the stuff you overhear around you slide.

It’s really important to let all the flippant moaning that you hear from people’s lives go. Breathe in and breathe out. Be better than you crave to be in those moments.

You have to do this so that resentment doesn’t build up for you or anyone around you.

Given what we go through, there are days where this is going to be really hard, it’s a very big ask I know, but learning to forgive the health digressions of those around you is going to make you healthier and happier, and here’s why.

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The problem with “how are you?”

I’m starting to dread when someone that doesn’t know me too well asks me:

How are you?

It makes me wince in some small way every time I hear it, to the point that some days I wish that people didn’t ask me. It’s simply too difficult and loaded a question to ask me these days.

This is because it’s a question bundled with too many social conventions and niceties. In many cases it goes far beyond someone genuinely wanting to know how you are and is more of a convenient by-word to start up a conversation.

Chronic illness isn’t convenient, and it can’t always be explained by a glib reply.

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Family, friends and compassion fatigue

There are days where endometriosis is all I can think about. I always feel the pain and fatigue, it hangs over me like a shadow that I do my best to ignore.

Then there are the little ways that the disease effects me, like the way it effects my walking speed or my ability to bend and move. Most days the pain tinkers with my brain as I’m talking and reaching for the right words, occasionally making my speech staggered and disjointed.

So with all that constantly our minds it’s reasonable to expect anyone that suffers with endometriosis to talk about it a fair amount.

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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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