Reaching over our words

“The single biggest problem in communication
is the illusion that it has taken place.”
― George Bernard Shaw

Living this chronic life is a strange parallel kind of existence. Most healthy people imagine it’s an extension of their experience; they have been ill and they draw on that experience to empathise with your situation. It’s a really good and important technique that we employ to inform empathy when we want to understand another person’s lived experience. We mine our lives for the closest approximation that we have lived, and we draw on that to contextualise and interpret what they’re saying so that we can respond appropriately. It’s a loving and empathetic thing to do, it’s a wanting to understand and doing the best you can to do so.

But it can lead to problems, it can lead us to make assumptions that aren’t correct, and when we don’t examine these assumptions we can respond inappropriately. Chronic illness seems particularly vulnerable to this for some reason. Maybe it’s because the suffering is often invisible, and so we rely on language to communicate our lived experience to one another, and our language is so limited, so reductionist.

It is easier to grasp that we cannot possibly understand the experience of somebody who has no legs because we have often sat down, or of a blind person by closing our eyes, or a paralysed person by remembering what it’s like to lie down. We may lie still and think to ourselves ‘imagine if I couldn’t move’, but we appreciate that this doesn’t come close to understanding the experience of being paralysed.

Yet when a chronically ill person says that they feel exhausted and ill, others can believe that they know what those words mean because they have often been sick or tired, and have used the words ‘ill’ and ‘exhausted’ to describe those experiences. Often people can then essentially stop listening well to what the chronically ill person is saying. Their memory and their assumptions override what the person is saying, as they project the memory of their experience on to the chronically ill person’s life.

It’s not wrong to draw on your experience, but when doing so you need to remember that your experience doesn’t come close to what they’re describing, it’s not only different in degree but also in nature. We are using the same language to describe fundamentally different phenomena. Chronic illness isn’t flu only worse and longer, any more than death is a longer, worse version of sleep.

When we don’t examine these gut reactions and assumptions it can make us dismissive of someone’s illness or judgemental about how it affects them. You know that flu is unpleasant but it isn’t a great tragedy, and so it’s easy to react to a chronically ill person as if their illness is a shame, rather than the life limiting disability that it is.

Some people go so far as to assume that because they could ‘tough it out’ when they had an illness, that a chronically ill person should be able to do that too, and so view any time that they are unable to participate in normal life as a sign of weakness or laziness.

Chronically ill people are often viewed by others to be self-pitying, lazy or weak. The reality is that they are toughing out an enormous amount of pain and suffering on a daily basis simply by existing, and the times and ways that you see it altering their behaviour are the tip of the iceberg of their battle. A chronically ill person who stays in bed isn’t lazy and they’re not giving in, they’re not telling you that they’ve had to stay in bed for sympathy, or because they feel sorry for themselves. They stay in bed because they are no more able to get up and get on with a ‘normal’ day than someone could stand on non-existent legs, and they’re telling you because it is simply a fact of their life.

This kind of judgement can be very subtle or very overt. It can come from a loving or harsh place. Sometimes it can be a friend gently encouraging you to try coming along to an event you’ve said you can’t manage, asking you to just give it a go as it might do you some good. It can be a relative suggesting yet another ‘self-help’ technique, not able to accept that the reason you’re not getting better is because the illness is chronic, not because you’re making bad choices about how to manage it.

It can also be the person who outright calls you lazy, gossips behind your back because they saw you out once and you looked fine so you must be making it up. It can be the fellow mum who rolls her eyes and says that some of us don’t have time to be ill, or the doctor who refuses to discuss symptom management and will only refer you to psychiatry for your ‘false illness beliefs’

There will of course always be some – many – who don’t really want to understand. They want to judge because it makes them feel good about themselves, or because their own pain makes it hard for them to honour others’. In those situations no amount of awareness raising will make a difference. Any attempt to communicate your life experience is simply heard as attention seeking, and any perceived failure on your part to fulfil what they regard as your responsibilities will be seen as selfishness or laziness. For these people you have to develop a thick skin and an impenetrable smile.

With the well meaning, it can be more difficult. A thick skin doesn’t work because these are the people you love and who love you. You want and need relationship with them and a thick skin and polite smile undermine any depth of real relationship. So how do we surmount this chasm of understanding? We need to work together.

We need to become expert communicators; to learn to speak and listen in such a way that what is heard and understood is actually close to what was said and meant. We need to check back, clarify, ask questions and answer them. This takes time, it takes honesty and vulnerability. It takes asking questions and being willing to answer them. It takes respecting somebody enough to assume the ‘best’ of them even when you don’t understand. It takes recognising your assumptions and scrutinising them, using your experience as a springboard, not as an expert witness. And all of this has to take place in the context of a mutually respectful and loving relationship, where vulnerability is safe, where misunderstandings are talked about and resolved, where forgiveness and grace colour all of our interactions.

There’s a big emphasis these days on raising awareness of different illnesses, and it’s certainly true that the more people understand about a particular illness or situation the better they will respond to those in it. But we can’t raise awareness on our own – there is no point shouting into a vacuum. We need you. We need you to listen well, respectfully and openly. Draw on your experience, by all means, but only as a starting place from which you can move toward better understanding.  You can assume you know what their tired feels like, or you can ask, you can observe, you can assume that if their tired stops them from seeing you, it is because it’s different from your tired, which means an extra coffee, an early night or a long day.

As a chronically ill person I have often shied away from really quantifying my experience, for fear of misunderstanding or being seen as an attention seeker. But the thing I’m realising is, if I don’t speak, then all people have to draw on is their own experience, so of course they will misunderstand mine. If I want to help people understand I have to give them more information. I will never try and force someone to hear or understand me, but I can offer my words to those who want them

I have been hurt, I have been disbelieved and accused, and so it’s hard to put yourself out there again. But I have also been believed, I have been loved, accepted and heard, and that is so healing. That is what drives me to being committed to loving, accepting and hearing the experiences of others, to not becoming that person who judges or dismisses because my pain is too overwhelming.

Fundamentally, I don’t want to just raise awareness of my illness. I want you to understand so that we can be in this thing called life together. If I don’t text you back, it’s not because I don’t care enough about you to be bothered, it’s because I’m too sick and I couldn’t. If you know that, really know that, you won’t feel unimportant or rejected by me. Instead you will know that your text made me feel loved, and lightened my load a tiny bit on a really bad day. You can know that I will be thinking of you and what you’re going through even though I can’t tell you that. If I do text back, you get to rejoice with me that I’m able that day, and you get to receive the enormous amount of love that I’m offering you by spending my preciously limited resources on you. Not so you feel guilty – so you feel loved!

What I really want isn’t just to be heard because I’m under some mistaken impression that my experience is more important or more valuable than yours. What I want is connection, relationship, communication. I want mutual respect and acceptance. I want the chance to be in relationships even if they are very limited or different because of my circumstances or yours. I want us to have a relationship that understands my illness so that it can operate beyond it. And I want to hear you too.


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