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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Expectations and why they’re good: Christmas

Did you know that it’s impossible not to have expectations?

Try it.

However vague, we always have some sense of what an event or a holiday or a job or a coffee-date will be like. Often, when we say we had “no expectations” what we really mean is we had “low expectations”.

Christmas and the holiday season bring a lot of expectations.

What comes to mind when you hear the word “Christmas”? Food, fun, community, isolation, stress – whatever connotations you have, they will form part of your expectation for the season.

Christmas and the good thing about expectations

Chronic illness can make expectations necessary.

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How to admit you are no longer praying for healing

“Do you still pray for healing for your mum?”

The question startled me. It startled me so much that an answer burst from my mouth before I had time to think.

“No.”

My response startled me even more.

“Not as much as I used to,” I continued. As if an explanation would make that two-letter word more palatable. “Sometimes. But I mostly pray for her symptoms now.” A pause. “Do you think that’s wrong?”

“No,” my friend answered. “I think that’s okay.”

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Why we need to celebrate small things

“Perhaps God is strong enough to exult in monotony…
it may be that God makes every daisy separately,
but has never got tired of making them.” – G. K. Chesterton

There are 2 types of people. Those who celebrate EVERYTHING and those who wait for the really big, land-mark events before they break out the confetti.

I admit I am often one of the later. I don’t want to celebrate prematurely, I want to wait until I’m sure it’s something worthy of celebrating… and as a result, I don’t celebrate much at all!

The problem is life doesn’t always bundle achievements or seasons into boxes. There is often no neat, conclusive ‘end’.

This is especially true with Chronic illness. When you can’t celebrate healing or an ending, it can be difficult to celebrate at all.

And yet I think we are called to celebrate, even when there’s no miracle or no big event. Why? Well I could talk about being positive and practicing self-care and embracing your life and all the rather ‘in’ phrases at the moment…. but I want to give you more concrete reasons.

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Abracadabra! (Watchers, we are not Fairy Godmothers!)

Contrary to popular belief, fairy godmothers are not trademarked by Disney. They do not always run around singing ‘bippity-boppity-boo!’ In fact, they may be closer than we expect…

A ‘fairy godmother’ is a type of character which charges into a dismal situation, waves their magic wand and fixes everything before disappearing in a cloud of fairy dust.

They exist outside of Cinderella – and in fact, are often viewed negatively by film critics. A ‘fairy godmother’, like a ‘deus ex machina’ can be a lazy way of resolving the characters’ problems and ensuring a happy ending by the two hour mark.

That said, how many of us would love a ‘fairy godmother’ in our own lives? A magic solution to all our stresses? Yes please!

Often as Watchers, we are tempted to try and fulfill the role of a ‘fairy godmother’ in our Loved One’s life.

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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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Why you should widen your perspective (and how)

“There are more things in heaven and earth… than are dreamt of in your philosophy.” – Hamlet

We live in a big world. It’s 40 thousand kilometres wide, with 7.5 billion people. There are 2 thousand types of jellyfish and 3 thousand varieties of pears.

How often do you stop to ponder the universe?

If you are a Watcher or a Caregiver, sometimes the world does not feel that big. Our hours and thoughts are occupied with one person. Our daily routines may not take us particularly ‘far afield’. Life, which in reality is BIG, can feel (and be!) very small.

Oh no, you may protest. I don’t live in a bubble! I watch TV. I listen to the radio. I get the news on my phone.

That’s good… but it’s not the same as genuinely experiencing the world first-hand, is it? Media such as TVs, newspapers etc. can give us a sense of the “busyness” of the world, or the “angst” of the world – but do they really help us understand the “bigness” of the universe?

I don’t have time, you may counter. “Experiencing the world” (whatever that means) is a luxury I can’t afford. That’s for other more fortunate people.

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How chronic illness changes your perspective of home (and what to do about it)

Home is where your heart is. Your home is your castle. Home away from home. Home sweet home…. the sayings go on.

We assume home is a safe haven, a place of refuge and rest. Yet when chronic illness is involved, even our understanding of ‘home’ gets complicated.

“Is home a place of rest for you, if your Mum is ill all the time and you never know how she’ll be?”

A long time ago, somebody asked me this question. I was indignant. As a teenager, my thoughts ran like this: Are you suggesting that I come from an unhappy home? Firstly, it’s none of your business, and secondly I have a good family and a good home –

The truth is, I did (and do) come from a “happy home”. Yet the question made such an impact on me that I remember it all these years later, because it was something I’d never thought of before:

How does chronic illness in the family affect the definition of ‘home’?

Or, to be more personal: how does your family member’s struggle with chronic illness affect your home life?

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Why you should attend your loved one’s doctor’s appointment (and how to be prepared)

A while ago someone I know was diagnosed with a chronic illness. After the initial diagnosis, she had to make an appointment to see yet another doctor. Before this appointment, I was chatting with her daughter and realised something rather abruptly: there is an art to accompanying someone to the doctor.

I’ve been to many doctors’ appointments in my life, both for myself and others. I’m neither proud nor ashamed of this, but I AM used to them.

And perhaps, not everyone is.

As a Watcher, a doctor’s appointment raises several questions: If it’s not for us, should we go? Is it important that we be there? What is our role? Are there reasons we shouldn’t attend?

Every situation is different and so is every person. I don’t think there are right or wrong answers, but I also think we can be a valuable asset at a doctor’s or specialist’s appointment. Here’s why:

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