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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An open letter to your sick sibling

My dear sibling, I write because there’s something I need to put square between us. You see, we share so much – genetics, parents, upbringing. Out of all the people in the world, I am most like you. However much we may differ in temperament and character, our blood binds us together.

To my sick sibling,

Illness will always be something between us,

Yet there’s one thing we do not share. You are sick and I am not. You struggle with your health and it will always be something you think about, whereas my life is not like that. You have doctors’ appointments and medication and a whole world into which I can never enter fully.

I wonder, sometimes, how this makes you feel. Do you ever feel guilty when you get attention, or when people tell you how brave you are? Do you ever feel jealous of me? Do you ever look at me and wish we could swap lives, swap bodies, swap trials?

Do you ever want to strangle me, because I can be carefree and you must be responsible? Or do you ever hate yourself because you look at me and feel weak and needy in comparison?

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LTCI #2: Am I my family’s keeper?

How’s your mum? How’s your sister?’

These are questions I get a lot. They’re great questions. They mean people are thinking about my sick family members, and it shows that the people around me understand that their illnesses are a rather large part of my life.

Most of the time I appreciate the time taken to ask a question like this, and the implied preparedness of the Asker to listen to a ‘deep’ response.

The other week though, I got asked this question twice, and each time it left me feeling guilty.

I bumped into my landlady as I was leaving my house, and she stopped me with a smile, and asked, ‘How is your mum going? And your sister’s health – how is it?’

I smiled in reply – and then froze.

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Why my blog will never go viral (reflecting on 2017 as a Watcher)

What I’ve learnt from blogging about chronic illness on Called to Watch

At the moment, even as I’m preparing to look forward to Christmas, 2018, and the future – I’m also looking back.

This is what I’ve learnt:

1. I have everything to gain and nothing to lose

Blogging over the past year has taught me that Watching is a ‘thing’. By this, I mean, loving someone with a chronic illness is a state of being worth talking about. It’s a relationship worth sharing.

It’s actually an important part of who I am – just as it’s a crucial element to who a lot of people are!
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The gift that wasn’t for her (LTCI #1)

As the shops get busier and my drive home after a late night shift becomes increasingly well-lit thanks to the current Christmas light epidemic, I’ve decided to introduce a new blog ‘series’.

Love in a Time of Chronic Illness (LTCI)

Many of my posts are either ‘answers’ or ‘explanations’ relating to the difficulties and loneliness-es of loving someone with a chronic illness.

I’ve never proposed to have the ‘only-exclusively-right’ answers to every situation of course. (Unless the Answer is Jesus, in which case I do!) But I write what I’ve learnt and I describe what’s encouraged me.

But for a while now I’ve been nursing a fear that perhaps these posts are portraying me unrealistically.

Eight hundred polished words are not the same as a polished life.
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Why you should sympathise with first world problems (when your own are much bigger)

I stubbed my toe.
I can’t afford concert tickets.
There’s no chocolate in my house.
Who hasn’t heard such complaints? From friends, colleagues – perhaps from yourself.

We often label them “first world problems”.
And they can be annoying. Especially as Watchers.
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3 things a stomach bug taught me about chronic illness

This week I was sick. Not chronically sick. Not even break-your-leg sick or appendicitis-need-operation sick. Merely stomach bug sick.

Uncomfortable, rather depressing, but half a week later and I was over it and back at work.
But something had changed.
While I was unwell I learned three very important truths about chronic illness – and I don’t want to ever forget them.

3 things I learnt about being chronically ill

1. Chronic illness means you are ill.

Don’t get me wrong, I never thought it was a walk in the park.

All my life my mum has battled various autoimmune diseases, and in the past few years I’ve watched my younger sister go through many similar struggles. I know personally how chronic illness can drain families, disrupt lives and sabotage futures.

But there’s nothing like being sick yourself to remember that the act of being sick in itself is awful.

It’s not just about the consequences or the collateral damage.

The minute-by-minute pains and nausea, the feelings of exhaustion, the frustration and the helplessness – it’s a horrible thing to experience.

I never want to forget that chronic illness means you are sick, and being sick is awful.

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Idealism or Pessimism: which is the right response to suffering?

Have you ever felt over the moon with joy – only to have someone snipe at you for being “too idealistic?”

We’ve all met That Person. The one with a hard life and huge smile. They never seem ‘down’ and they’re always hopeful about the future, even when there seems to be little to hope in!

Perhaps you’re that person. Or maybe you’re more inclined to the opposite view… You understand that life is hard and it probably won’t get any better, and having fun is all very nice, but it’s not reality!

Idealism or pessimism? Which is the right response when confronted with tragedy and illness?

It’s easy to judge a response when it’s the opposite to our own

If you’re bubbly and full of life it can be extremely disheartening when others “drag you down”. It’s not pleasant to have our “bubbles burst” or our happiness frowned at!

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