How others can talk about how we live with illness

It’s amazing watching the change in someone when I explain that I am chronically ill. There’s a subtle change that happens. Small enough for someone else to miss, but I’ve seen it often enough now that it seems so obvious to me now.

It’s part of the negative side of having an invisible illness. It’s something that people who are well will suggest that I should count my blessings for, because I can somehow hide my illness around me like underclothes, and present it only when I want.

You’re so brave

People forget that my pain is always there, and no one is more aware of it than me, and I make no attempt to hide it on most days, for most people though it’s the elephant in the room, it’s easier for healthy people not beleaguered by illness by pretending it’s not there.

When I inevitably have to explain that something is wrong with me. It’s almost as though some people stiffen around me, their tone changes, and gone are the pleasantries about the weather and the offers of help start, the gentle suggestions. Would I like a chair? Can I hold that for you? Kindness and sympathy starts pouring out of people for reasons I can’t entirely ascertain.

The way people talk about incurable illness is fascinating. How brave I am. How inspiring. Long-term illness is almost talked about romantically by people who are well. This sort of reaction makes our living with our illness harder to put into words, we’ve seemingly being praised for how well we’re managing and all the little details about how we rough out each day are swept under the carpet by this well-meaning positively about us just being outside and facing the world.

You’re looking so well

I always wonder how can someone tell when we’re managing well? Most people default to the only way they know, which is how we look on that particular day. That’s a huge misnomer, for the reasons I’ve already mentioned. Most people could not tell when I am pain, many will not realise when I am having an awful day. My face and my lack of visual disability cues belies how ill I really am. My appearance with illness is entirely irrelevant.

Yet many people will say how well I look, and mean this genuinely, they are grasping for an easy thing to say, and while this would compliment most people, it’s tinges me with regret most of the time I hear it. Almost as if my immense experience of managing with illness is lessened by someone’s assumption that it can be summed up by something so flippant as beauty.

You keep on fighting!

There was a really interesting piece on the BBC website recently about how we talk about cancer and other long term illness has changed. Much of the stigma of living with cancer has gone, and what has replaced it is an odd sort of military rhetoric, that illnesses are something we can engage in fisticuffs. It’s not always this simple, but I personally find this is the least troubling of the metaphors of illness. It at least makes some attempt to realise the difficulty that comes with living with something long term. Not to mention the unending fortitude you have to dredge out of yourself each day.

Many of us feel powerless due to illness and this approach is at least a concession to the fact that we as patients have the huge part to play in our own future wellbeing. Everyone experiences illness differently though and my only word of caution with this is that not everyone finds this sort of approach helpful.

You can’t be ill

This one is the half-brother or sister of “you’re looking so well”  . Someone’s disbelief about your illness can be so profound (based on your appearance and how well you seem to be coping) that some daft people start to believe the hype. This seems to tap into how troublesome people find illness. They try to judge what living with long term illness against their own limited experience of temporary illness. In some people’s minds illness has to be something you can recover from, and if there’s something you don’t recover from then “you’re not trying hard enough”. (See keep on fighting).

You’ll never hear this from someone who either has personal experience of chronic illness, and you’ll rarely hear this from someone who has experience of caring or being around someone who is ill for a long time. So I personally find this reaction, very telling and extremely naive, and perhaps the most dangerous.

How I describe my illness

I live with my endometriosis and I manage my chronic fatigue. I accept my chronic illness, not because it is welcome but because it has become my new normal. If you want to know more, this is how I self-manage my illness.

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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.

2 responses to “How others can talk about how we live with illness

  1. Thanks for this post I come across this a lot and I find it increasingly difficult xx

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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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