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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When NOT to fight someone else’s battle (even if you want to)

Have you ever sailed into an argument or situation with all cannons blazing… only to realise later that you should have just let the matter drop?
Have you ever fought long and hard for someone else – and then wondered whether you’re actually doing the right thing?

I have to admit, I have a tendency to get caught up “in the moment”. With the adrenaline rushing through my veins, I find it only too easy to believe that my right is the only right and it needs to be defended at any cost.

Of course, this just gets more complicated when it’s not my own battle that I’m fighting.

As Watchers we are often called to fight on someone else’s behalf. But what if sometimes fighting is not the best course of action? What if sometimes the right thing is to step back and put down our arms?

How are we to know?

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Why you SHOULD fight someone else’s battle (when you’d rather not)

If you’re like me, there are times when you are ‘rearing to go’ when a disagreement comes up.

Someone needs you to stand up for them? Done. Need to make a complaint? Done.

Need to convince the well-meaning shop assistant to check out the back for more stock? Done.

And yet…

… Some days the last thing you want to do is rub against the grain. Instead you want to take the back seat, keep your head down and maintain the peace. You’d rather deal with the consequences later rather than speak up in the moment. 

There’s nothing wrong with this – except in the context of chronic illness sometimes the consequences aren’t ours to absorb.

As Watchers, caregivers and loving friends, sometimes we are called to fight our Loved One’s battles, not our own. When we give up, they are the ones who suffer for it.

So what do we do?

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Planning your own future when you have a chronically ill family member

Sooner or later all of us want to look into the future. The time comes when we need to sit down with pen and paper and plan out our next few years. The problem with doing this as a Watcher is that chronic illness extends into the future too! It’s a big part of our life and we can’t ignore it or naively pretend that it will simply ‘go away’.

How then do we plan our future, keeping in mind our Loved One’s chronic illness?

How to plan your future while thinking of your sick family member

1. We admit it is hard

I think we’d all admit that planning our future is hard anyway. Whether you have too many possibilities or not enough, it’s difficult to figure out what something we have never experienced will look like. Most of us have dreams we’d like to see become reality, or at the very least we dream that one day we will have dreams.

Considering your future in the presence of chronic illness is even harder. The reason for this is that chronic illness is unpredictable. We can’t say how long our Loved One will need us, or how soon they will take a turn for the worse or for the better. We want to be realistic, but we also want to be hopeful.

Of course life is unpredictable for all of us. I could die tomorrow. And yet loving someone with chronic illness means that my future plans will impact them. Whatever I decide there will be some ramifications in their life – and so the burden to ‘choose right’ becomes even heavier.

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How to write about Chronic Illness (Watchers, we are not Biographers)

Are you ever tempted to sit down and try and order the pieces of your life?

As you love and care for your sick Loved Ones, do you ever wish you could straighten your hardships out into a coherent narrative, one with a tidy moral and neat conclusion?

Do you feel that if only you had a polished version of your life, it would be a enough to redeem your suffering, because then it would have a purpose?

In short, do you ever neglect your role as a Watcher in order to become ‘Biographer’?

This is what it looks like:

You are often on the look-out for a purpose or a theme behind your Loved One’s suffering, or in day to day occurrences

You have a yearning desire to put each new experience into words so that others can learn

You are tempted to dismiss parts of life which don’t lend themselves to ‘story’

You are drawn to those areas of life which seems just a little bit more dramatic, heroic or exciting

You feel that your life and experiences are wasted if nobody reads about it and learns

I’m going to switch to ‘we’ now, because this is something I am guilty of at times…

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The problem with chronic illness and social media

Sharing about chronic illness on social media: It’s difficult.
Particularly when you are only watching someone else’s battle.

That I believe this might come as a surprise, due to the slight fact that this website is full of articles!

Not to mention, I have associated facebook pages, groups, pinterest, google plus and twitter accounts! That’s a lot of social media.

Yet each time I share about the place of chronic illness in my life (as someone who has sick family members, but is not ill myself), I struggle.

It’s a hard topic to think and talk about – let alone share online with everyone and anyone!

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Yes, you are a burden to your chronically ill friend…

Have you ever felt like a burden? To those around you? To your friends, your spouse, your community?
I have.

It’s easy to feel doubly burdensome when someone you love is ill or going through a tough time. You don’t want to add to their struggles… and yet somehow you accidentally end up doing so!

Are you a burden?
I am.

Sorry, but you are a burden

A burden is something troublesome. Something hard to get rid of. We can be burdened by duty, worry, conflict or disease.

But more often than not, our real burdens are people.

All relationships are burdensome. All attachments hurt. Friendship is ecstasy and agony.

When we love someone we worry about them. We weep when they weep, we laugh when they love. It is people – family, neighbours, friends, spouses – which hamper our futures and make our decisions doubly difficult.

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