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

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?

Home can be hard

I don’t think this is a revelation to anyone. Chronic illness or not, family life can be difficult. Stick more than one person under a roof, and complications and frustrations breed quicker than mice.

This is natural, this is to be expected. Relationships are full of compromise and sacrifice. There will be arguments and discord, just as there should also be love and laughter.

Yet chronic illness certainly complicates the situation:

• because some members are going to be restrained in ways others are not, frustration, jealousy and bitterness can arise.
• because some members may be forced to spend a lot more time at home than others, home is going to be a very well lived in place.
• because chronic illness is not fun there are going to be a lot of hard, tearful times under your roof.
• because chronic illness can come and go, home life is going to be unexpected and unsettling.
• because chronic illness goes on and on, home life cannot be spontaneous.

Find a home away from home

This is not revolutionary advice. In fact, I suspect many people join teams or take up hobbies partly so they can leave their home.

That said, it’s often something that we need to plan for. It requires a conscious decision and consciously.

There’s nothing wrong with needing a break. There’s nothing wrong with savouring a few hours out of the house every week. It doesn’t mean you are ‘high-maintenance’ or ‘childish’ or ‘flighty’.

On the contrary, it can be a mature act of ‘self-care’. Leaving the house brings perspective. It gives us breathing space. It forces us to compare, contrast and re-evaluate.

It doesn’t have to be a huge event either. Something as ‘simple’ as a gym membership, a park down the road, a walk around the block, even a car to sit in for a while – these can all be ‘homes away from home’.

Never forget that the ability to leave your house is a gift

Not everyone gets the chance. People with chronic illnesses, older people, people who can’t drive, children – it’s not as easy for them, yet they need a break just as much. If you can leave the house, is there a way you can help them to do so too?

It’s a huge, huge blessing to be able to have another spot on this earth where you are welcome to sit a while. Let’s not forget this.

Home is always Home

As human we like normality. We find comfort in it. Thus, even when home is ‘hard’ or ‘disruptive’ it is still holds a special place in our lives. It is what we are used to, it is a place we can be when we don’t want to be ‘out in society’.

More importantly, home is home, because it is home! It’s wherever we live, and we don’t always get a choice in what it looks like, where it is, and who is in it.

There’s a few lessons in this:

Don’t look down on other people’s homes, simply because they don’t fit your idea of a ‘nice home’.

Don’t assume that home is not a comfort just because chronic illness is there

Don’t assume that everything is ‘ok’ at home simply because someone says it is. Often what is ‘normal’ becomes ‘okay’ simply by default. Thus, home becomes ‘okay’ simply because what occurs is normal – but abuse does exist, and we must not be blind to it.

Don’t make your home into a scapegoat. Ie. ‘if only my home was cleaner, bigger, full of nicer people, quieter – then I would be a kinder person.’

Don’t assume others like/don’t like having to ‘stay at home’ – just don’t assume at all.

Bring the world into your home

Just because home is a place ‘away’ from the world, doesn’t mean it needs to be isolated from the world.

Society, culture, community have much to offer, and in this day and age you often don’t need to be physically present to enjoy them.

Podcasts, video-groups, books, TV and photos are the obvious ways to enliven ‘home’ for those for whom it can be a prison.

Yet personally, I feel the most important and accessible ways are these:

Stories

Practically every time you leave your home, you leave a shared existence and enter an individual one. You will find yourself in situations and conversations which are different to those experienced by your other family members.

As a result you suddenly have lots of ‘new stories’ to tell, of which you, and you alone, are the curator. How can something that happened to you brighten up someone else’s day? How can your observations and your realisations entertain, teach, or enlighten?

Most of us share snippets of our day without even realising. It’s a natural part of living in community. Still, be encouraged. By retelling and sharing your experiences you deepen relationships and make your home a warm, exciting place to be.

Ideas

When we leave the home we are given the opportunity to meet new people, talk about new topics and engage with novel ideas. It’s tempting to tuck them away as soon as we step back over the threshold… it’s easier to return to the ‘same old’ rather than disrupt normality.

Still, sometimes disruption is a good thing. You have been gifted with new perspectives and challenging ideas – why not gift them to someone else?

People

If you can, invite people over. Open up your house, welcome people under your roof. It doesn’t have to be for a formal meal or a long visit – simply chatting to the neighbour in your kitchen rather than the doorstep can go a long way in erasing negative connotations or feelings of loneliness which can become associated with a home haunted by chronic illness.

“Home is where the heart is”

This is an old adage, but I feel it contains some truth.

To me it is also a challenge – what is in my heart? How can I make home a safe, loving place for the others I share it with? How can I be an encouragement and a light in a home where chronic illness dwells?

//Has chronic illness changed your perspective of home? For the better or the worse?

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