“What is a simple way of explaining the concept of living well with chronic illness to other people? People without chronic illness seem to find it difficult to understand that I don’t view my life as an awful tragedy…and it takes a long time explaining why I don’t feel that way.”
Let’s begin by considering your audience. It helps to meet people where they are because its easier for them and our results will likely be more successful too.
Consider the potential mindset of the person you are wanting to understand this. It’s harder to make ourselves clear to someone if we are focused only on what we want to put across not how to best create understanding in our listener.
The first question then, is why are they struggling so much with this concept? And how can we make it accessible for them?
Although we can’t know what our listener is thinking and feeling, there are some feelings which are very likely:
Fear: speaking about chronic illness can be very scary. For people who don’t have chronic illness or haven’t come across it much before, the conversation can be terrifying. It can bring up previously-dismissed and suppressed thoughts around mortality, the fragility of the human body, its fallibility and very human-ness. If a person is wrapped in in their fears, in the grip of them, it may be nearly impossible to understand how anyone can live well with something they can barely acknowledge.
Fear may also come up around inadequacy. If the person you are speaking to isn’t happy with their own life, isn’t living well without chronic illness, then they may struggle with the concept that you are living well, and with a huge challenge. Maybe they’ve drifted off into comparison. Perhaps they don’t believe you, because they can’t comprehend how it’s possible. It could be that they are subconsciously invested in you being ‘unwell’ because that’s the status quo and like many people, they resist change. Or if you make positive changes in your life then it challenges them to consider and reflect on their own life – and if thats uncomfortable there’s going to be resistance there.
An acute pain mindset: if there’s been a time in your life when you didn’t have chronic pain perhaps you can remember how it felt to have a sudden acute pain/illness? Like a toothache – it felt like the only pain in the world and you couldn’t imagine surviving it. Or when you had a cold or a virus and it felt like you’d never live through it. For many people without a chronic condition, the experience of acute pain is their only reference point. They’ve never had to live with pain long enough to learn how to manage it, work with it, breathe through it, move around it. So they may be imagining that every day of your life you are feeling like them when they first have a cold and feel like the world is ending. From this point of view it’s easier to see why they may think living well with pain is impossible. It’s been impossible for them, and that’s as far as their experience goes. They may then be projecting that experience with pain on to you.
So, bearing in mind the audience, how do we actually explain? I’ve got some tips:
Attitude: focus on your attitude not your audiences’ response. You are sharing about your life and do not need their permission for your experience.
In my experience, people tend to meet us where we are, so if we are very positive and pragmatic about a situation most people will take their cues from us. If you approach from a defensive or apologetic perspective there’s likely to be confusion. However, bearing in mind the fear and acute pain perspective your listener may have, if you state clearly your experience and anticipate being understood, it’s much more likely to happen that way.
It’s the difference between:
A. A defensive explanation
Friend [in quiet, death-bed tones]: “So, Graaaaaaace (sympathetic pause), how ARE you?”
Grace [through gritted teeth]: “I’m fine, ok? Well, I’m not fine as you know but I have to live with this. So my life isn’t going to revolve around it the whole time. I do have a life outside of illness you know.”
Friend [puzzled]: “But I thought you were too ill to work/walk/go out?”
Grace: “Yes, but that doesn’t mean I can’t do things at home”
Friend: “Oh, it’s good that you are keeping yourself busy, don’t mope!”
Not a good interaction for either, as I’m sure you can tell. If I move from the perspective described above, however, look how it can shift:
B. An Attitude Led Explanation
Friend [in quiet, death-bed tones]: “So, Graaaaaaace (sympathetic pause), how ARE you?”
Grace [cheerfully]: “I’m having a super day today thank you. It’s lovely to talk to you, I wrote some letters this morning, I’m looking forward to going swimming tomorrow and the sun is shining! How are things with you? How is your work/cat/partner/budgerigar?
Friend: “Oh, work is so boring, I hate it. And I’m ok. I didn’t know you could swim, are you getting better then?”
Grace: “I don’t really think about chronic illness in terms of getting better or not, more about where I am and what’s happening for me today. And yes, I learned to swim as a child, it’s great fun and the water supports and aids movement. Tell me more about work, what’s getting you down?”
Which conversation would you prefer to have?
Clear: make your explanation succinct, clear and repeatable. For a full script, check out Pitch Perfect What’s Wrong with You. It guides you through writing a ‘pitch’ and a positive introduction about you and the illnesses you are living with, crafting explanations and dealing with common questions and misconceptions about diagnosis and living with illness.
Cues: its helpful to give your audience cues. Give them verbal direction. So for example, you could say something like: “I have a new diagnosis but I’m feeling very vulnerable about it so I need to keep the conversation positive right now.” Let them know how you’d like them to respond to this.
If they don’t and get caught up in fears and spiralling thoughts you could say something like, “This conversation is feeling a little low to me, let’s change the subject to something brighter, what are you doing this weekend?”
Show don’t tell: address the question through the way you live. If you are saying that you are living well, but moaning, complaining, always talking about what you can’t do, saying no to everything and never making any accessible suggestions then people probably will ignore all explanations and see your life as sad. If you are ill, but you are living, doing what you want, and sharing about your exploring, challenges and life, people will see your life as the adventure it is.
Let them think it: can you try allowing people their misconceptions? We can’t control what people think of us, and if they have misconceptions, unfair, untrue and frustrating as they are, they aren’t something we have control over. In fact, they aren’t really our business and they say more about the person holding them than they ever do about us. Maybe you can choose to seek out people who do appreciate the life you are living, or perhaps the people in your life who don’t understand now will grow to understand as they witness you living well with illness.
What’s your experience in explaining living well? Any tips to share in the comments? For anyone who doesn’t have chronic illness/chronic pain, please share your point of view, pointers, and/or questions etc., you have coming from a different perspective.
And if you have any questions you’d like me to answer here, share them in the comments!
What’s it worth? It’s a common question, perhaps a common-place one. We ask what a potential purchase is worth, what an object of perceived value is worth, and if we are ill then we often ask what an event is worth in terms of the time and energy we will spend there. It’s a fair question: is it good enough to justify what I am giving? Does it have a value equal to that which you gave?
But when did we begin asking what humans were worth? I mean, darling just look at you…
The problem as I see it, is this: we have been seduced into thinking worth is measured by doing. Or rather, worth is defined by output. So a person who is able to produce and put out a large amount of work is ‘worth’ the resources they use to keep them alive while they produce that work.
This becomes even more complicated when we add in disability. Because then we pull in the rhetoric of politicians talking about the ‘benefits deficit’, the budget, and basically what it’s costing the country to keep you and me alive. And it seems like the government wants a good return on it’s investment. That if it’s paying for hospitals, wheelchairs, district nurses and careers benefits, then it wants us to strive hard to ‘get better’ (even though ‘getting better’ is a relative term), for us to be a ‘brave cripple trope‘ or ‘inspirationally disadvantaged.’ But still, y’know, just so full of pluck and vigour it warms the heart of all who see us!
However, we didn’t agree to this deal. And human worth cannot be measured in earnings, output or these limited definitions of usefulness.
There is a medical and mechanical model of disability. In the mechanical view the body is seen mostly as a machine which has broken down and cannot be fixed. The disability is seen as the disabled person’s problem or fault and any adaptions as a personal adjustment, rather than as part of making the world accessible and fair for all.
When you think about worth, how do you see yourself?
Do you think of your worth as linked to your work? Are there days you are able to ‘do’ lots, or ‘better’ days because you are more useful?
Words like being a ‘burden’ or a ‘drain’ get thrown about, it’s a great fear. How deep does it go? Do we worry on a survival level that our tribe won’t want to care for and keep us if we can’t give in some way?
What is useful? We tend to define usefulness by what it produces. A country’s worth is defined by what it produces, the Gross Domestic Product or Gross National Product. Yet there are some interesting side effects to this way of thinking:
“Every time someone gets cancer, the GDP goes up. Every time an infant dies, the GDP rises. A drive-by shooting improves the economy by $20,750. If the victim dies, and there is a murder trial, the benefit to the economy leaps to well over $100,000. An oil tanker spill can contribute between five and twenty million dollars of “growth”; the benefits of an airline crash or terrorist bombing can be far greater…In short, we have converted destruction into an economic good. But anything that grows without money changing hands — parents who care for their children, people who voluntarily care for the sick, the dying, or the homeless, people who pray or meditate or walk in the woods — these at best have no value. At worst, they take away precious time and energy that could be used to grow the GDP.” - Wayne Muller, Sabbath
Yet a woman who wakes up, says a prayer, smiles at her loved ones, later gets out of bed and makes breakfast without hurting anyone or anything…if she sits in the garden in the afternoon, listening to the birds, rests and plants some flowers…then perhaps listens to the radio, writes a letter and speaks to a friend, takes in a parcel for a neighbour and hugs her dogs for an hour… she may not be considered to be ‘producing’ but what a wonderful life she is leading, hurting no one and giving love.
I believe in the right to be a human being not a human doing. That I get space on this planet by being here, and I don’t need to rush/prove/busy myself to be worthy of the resources my existence uses.
If I didn’t believe that, how could I cope with being bed bound? And not ‘working’ for many years?
I live knowing that I can touch lives and make beauty simply by being – living my life with compassion, moving with grace, speaking with kindness, practicing my ethical choices, being a good friend, growing a garden. All the things I do naturally because I am moved to are more than enough.
In contrast when I begin my day and life from a place of ‘not enough’ I am always rushing to catch up with myself in a race I can never win. Joyful moments aren’t embraced as I’m always looking for the next task, the next thing I must do in the race to be enough.
I embrace my worthiness each day with kindness and self-compassion. I invite you to do the same.