“I’m useless” (Chronic Illness Misconceptions)

‘I can’t do anything. I can’t leave the house. I can’t keep my plans… I’m useless.’

‘I’m useless.’ Who hasn’t felt that way sometimes? Often our Loved Ones with chronic illness, who can’t always do what other people can, can feel this more obviously. They may not use the words ‘I’m useless’ but if you listen carefully to their frustrations and yearnings you may hear it all the same.

‘I’m useless.’

How can we respond when someone feels this way in the context of Chronic Illness?

This is the first post in the series Responding to Misconceptions in Chronic Illness. Each one will begin with a statement about chronic illness such as, ‘I’m all alone’ and follow with a ‘letter’ from a Watcher in response. So without further ado, let’s begin!

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If all else fails, remember two things

How is Watching going for you? Are you in a season of relative peace or does it feel like troubles are knocking at your door and crowding out your view of Jesus?

Whichever it is, (and maybe it’s both!) I’ve been doing a bit of thinking lately about the most important reminders for our Watching journey. The theme of Called to Watch this year is Watching for the Long Haul, and so far we’ve reflected on:

Practicing Self-Compassion as Watchers

The Importance of Stopping to Heal

Learning to Lament

But if there were two things I could always have at the forefront of my mind as I Watch, two things which would make a real difference to the way I Watch and equip me for the long haul, it would be these:

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COVID19 and Chronic Illness: life on the edge of uncertainty

“Life can change completely in an instant.”

Many of us are probably well acquainted with this idea. A tiny niggling pain, a doctor’s visit, a diagnosis – and suddenly, nothing will ever be the same again.

We constantly live on the edge of this uncertainty. All of us – every day, every minute.

Covid19 and chronic illness

For as long as I can remember I have known I will not have my mum forever, and yet that split second phone call during my lunch break at work when I heard she had a mass in her pancreas still changed everything.

For as long as I can remember I’ve devoured books where dramatic things happen. Kids die too young; people are wounded in battle; last minute inheritances save the day; all is lost and all is rescued over and pver again. Yet I still remember exactly where I was when I found out that my ten year old friend had died suddenly from an undiagnosed brain tumour.

Likewise, I suspect that while many of us may “know” the speed with which reality can be remade, these past few weeks of of COVID-19 have also come as a bit of shock. No one really expects a pandemic. Not many people imagine that soon their actions – perhaps already severely curtailed by disease or circumstance – will be hedged further by governments seeking to prevent disaster.

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Why small talk is so important in chronic illness (& why I neglect it!)

A while ago I read a fascinating article about phatic communication, or ‘small talk’. Phatic communication is speech which serves a purpose other than that implied by the words used. An example would be the question, “how are you?”

What this question is actually asking is, “how are you physically/mentally?” Yet how many of us actually answer this? And why don’t we?

It’s not because we’re being rude or ignoring the question. In fact, often askers are surprised when someone lists their current physical health in response! It’s because we understand that in our social context the question is often merely a greeting, a social nicety which has to be used before the ‘proper’ conversation can begin.

An example of phatic communication (small talk!)

Often when I run I call out a (breathless) ‘hi!’ or ‘good evening/morning!’ as I pass someone by. About 3 times out of ten, someone will reply. Out of that 30%, at least half reply with ‘good thanks’ or ‘I’m well thanks’ – despite the fact that I never asked if they were!

This is because they are so used to ‘how are you’ being part of ‘hello’ and other social niceties (or nonenties!) that they assume I’ve asked and thus reply automatically.

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3 places not to place your hope in during chronic illness (and one place you need to!)

In every day life, most of us depend on our health – for the future, for happiness, for security. When your health or the health of a loved one is ripped away because of chronic illness, it’s easy to be left despondent.

After that awful, sinking feeling of having the foundation of your life pulled out from underneath your feet, our natural response it often to quickly rebuild.

We hunt desperately for a new foundation, a new hope. But what will it be? Sometimes it’s easy to break our hope into little bits and place it in different baskets.

3 places not to place your hope in during chronic illness

ONE: Medical Intervention

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7 ways to use words to encourage someone with a chronic illness (without lying)

I sometimes find that ‘encouragement’ feels like lying, especially when it comes to chronic illness.

I want to cheer up my sick family member or struggling friend, but when I search through my “encouragement vocabulary” the gems I unearth are phrases such as:

‘It’s alright.’

‘It will get better.’

‘God will heal you.’

‘Good will come of this, just you wait.’

These comments sound nice and hopeful. They are genuinely designed to lift someone’s mood – but often I find they don’t ring true.

How can I tell my loved one ‘it’s alright’ – when it’s clearly, obviously, not?

How can I promise them ‘it will get better’ or ‘God will heal you’ or ‘good will come’ – when this might not be the case?

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How to write a Get Well Soon card (to someone with a chronic illness)

Get Well Soon cards are great for broken legs and pneumonia – but do you do when someone won’t ‘Get Well’ (soon or otherwise)?

If you’ve ever browsed a two-dollar shop (as we call them in Australia), you’ll know there are many types of cards you can purchase.

Happy Birthday; Congratulations on your baby/engagement/anniversary; My Sympathy; and Get Well Soon cards. This last category can be somewhat disconcerting in the context of a chronic illness.

Of course, the easy solution is to buy your card without those words printed on the front.

But the problem goes deeper than that – what do you write in a card for someone who’s not going to get better? Should you send a card at all? How often? What’s the point?

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How to make hospital visits less awkward

I’ve spent quite a bit of time in hospitals, both visiting Loved Ones and working. It’s made me realise that visiting someone in hospital is not quite the same as taking someone out for coffee or popping over to see someone at their house.

In fact, for many of us, visiting someone in hospital might be a novel, somewhat unsettling experience. Perhaps we have bad memories of other hospital visits, or perhaps we’ve never been to one before.

For others of us, a hospital visit might seem easy and we don’t understand why we can’t just pop in at any time with whoever we like.

While neither perspective is ‘wrong’ (and I have held both at different times) they can both miss the point.

Visiting someone in hospital is not about us, how easy or difficult it is, or how it makes us feel.

Visiting someone is about loving them.

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What to do when you are unable to serve your local community due to sickness

There are seasons for all of us where we are not able to do all we want. When chronic illness enters the picture, these seasons can be long indeed. It can be especially difficult when we are unable to serve or help our local community.

For those of us who are part of a church, a neighbourhood, a sports club or a community group we know what it is to volunteer our time and energy. It is a worthwhile and often enjoyable experience.

It can be challenging and even draining, but there’s something about working as part of a team toiling towards a common goal that can be very uplifting.

If you are a Christian, it is also part of fulfilling Jesus’ command to “love your neighbour”.

Yet illness can get in the way of even our most passionate desires to serve. Being available for a Loved One struggling with their health can mean we are unable to give of our time or energy.

So what do we do?

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How to serve your local community when your family member is sick

What does it look like for us to love and serve other people besides our family member with a chronic illness? Is it possible? Is it necessary?

I’ve written previously about serving with a chronic illness, and serving overseas when someone you love has a chronic illness. But what about serving in your local church or community?

Should you serve your local community if your family member is sick?

If you are part of a local church or community, there are probably numerous opportunities to serve. Often during a Sunday morning worship service alone, you could potentially:

Play a musical instrument

Sing

Do a reading or announcement

Usher people in

Open up/lock up the building

Help in baby sit

Teach in Sunday school

Make coffee/tea

Clean up the kitchen/building

… and that’s all within the space of about two hours! Throughout the week there are often many other situations in which you can fulfil the Biblical commandment to serve and love one another.

Yet it’s not that easy, is it? Those of us who have a family member with a chronic illness can find all the opportunities to serve somewhat daunting. There is so much need… and yet perhaps we find ourselves ill-suited to fill it.

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