Having a chronically ill parent: It’s more common than you think.

Do you have a parent with a chronic illness?

Besides the term ‘caregiver’ which has all sorts of connotations, and often doesn’t describe the nuances of our situation, there’s not really a term for us. I like to use the word: ‘Watchers.’ 

Who are we?

We are the children of parents who live with chronic illnesses. That illness may be physical or mental. It may be recognised or diagnosed. It doesn’t matter. What does is that someone we love is suffering. And that hurts.

I was searching for a word that was all-encompassing. I wanted to avoid the label ‘carer’ – which has connotations of being paid and seems constrained to mere physical care of another. Physical care is invaluable and many of us may provide this for our Loved Ones. Yet others of us do not. Nevertheless, our life is mixed up with our loved one’s pain-filled life.

Do you feel helpless or lonely?

It’s easy to find ourselves helpless, and this is painful and even embarrassing. And this is even harder because we didn’t choose to Watch. This is the parent we have – there is no sickness-free version available.

And so we walk beside them, or in front of them, or behind them.

We cannot choose to walk a mile in their shoes, as the common saying goes.

Even that is denied us.

It’s not easy being the “healthy one”

We apparently have the world at our fingertips – and yet we have unique struggles of our own: We watch our parent – but who watches us? We answer the question ‘How are they?’ – but who asks ‘how are you?’ ? As our parent struggles, we suffer vicariously but also personally. There’s nothing easy about Watching.

Am I really a ‘Watcher’?

Do you have a parent? Are they chronically ill? Then you’re a Watcher. It’s not an exclusive club. There’s no entry free, no prize you have to achieve to enter. There’s nothing fancy about it (although, on one level, there actually is). It’s just life for us.

And that’s such a large part of what makes Watching so hard. It can be lonely. Each of us Watch, but we all Watch alone. Have you ever longed for someone to stand by your side, grasp your forearm and say with knowing, quiet voice and full eyes, ‘I get it. I understand.’?

I have.

That is the purpose of this blog.

You see, there are two answers to loneliness:

One is community, the other is God.

Why start a blog for children of chronically ill parents?

Firstly, it’s a journey that never ends – and so encouragement is needed for the everyday. Secondly, It’s a journey that can have distinct beginnings and endings, and so we need help for these times too. Lastly, Watching a chronically ill parent is a journey that, sooner or later (like every journey) will at some point encounter God. This blog is about that as well. I don’t have all the answers. Often I have none.

Nevertheless, I pray that these words will help you ponder your life as they have helped me ponder mine – and that your experience will be the richer for it.

May they provide a feeble sense of community and a less-feebler sense of God. Like C. S. Lewis, I have only,

“… been emboldened to write of it because I notice that a man seldom mentions what he had supposed to be his most idiosyncratic sensations without receiving from at least one (often more) of those present the reply, ‘What! Have you felt that too? I thought I was the only one.'”

~ C. S. Lewis, Surprised by Joy

Welcome my friends and fellow Watchers. Shall we travel the road together? START HERE

After a diagnosis: Why do I feel numb?

There are no safe guards in this life.

Just because someone suffers from lupus, doesn’t mean they can’t get diagnosed with appendicitis.

Last week my mum who has type 1 diabetes and multiple chronic illnesses was diagnosed with pancreatic cancer.

It’s not fair.

And that’s okay. It doesn’t have to be.

I’m going to try not to make this post a mere outpouring of my raw emotions, because that is neither helpful for others, nor in line with the tradition of this blog.

That said, such a diagnosis WILL impact my writing, and it’s not something I can keep quiet about. Partly because it’s real and leaking into every corner of my life, and partly because I hold out the hope that my reflections might help others going through similar trials.

At the moment I’m in the numb stage.
It sort of doesn’t seem real. How can this be happening to my own mum?
Continue reading “After a diagnosis: Why do I feel numb?”

3 reasons it is good to be sad after a chronic illness diagnosis

I don’t like being sad. Do you?
Being sad means I no longer feel like laughing at someone’s joke or daydreaming in the sun.

Being sad can mean I get headaches from crying, or find it difficult to concentrate during lectures, sermons or long conversations.

And yet, the truth is, when tragedy strikes our loved ones, it can actually be helpful to be sad.

Here’s why.

3 reasons it’s good to be sad:

1. Sadness is reality

Let us not lose sight of the fact that when someone we love is suffering we ought to be sad.

It’s not merely ‘okay’ or ‘acceptable’ – but it is good.

If your heart does not break at the new distress of someone you love, something is not right.

Feeling sad means you’re human.

It means you have a living, breathing, sympathetic heart, and that is good. We were not created to be stone statues, but living people created in the likeness of a God who weeps as well as laughs.

Sadness is the right response to tragic reality. It means you see the world as it is. Life is not all happy games and hopes fulfilled. It is just as equally a dark valley and night time tears.

To see and feel sorrow when it is present is good.

Sadness is the right response to tragedy. It is part of being human – tweet!

Continue reading “3 reasons it is good to be sad after a chronic illness diagnosis”

The 3 dangers of being sad after a chronic illness diagnosis

Sadness after a chronic illness diagnosis, that’s valid, right? 

It’s a good thing… yes?

Well – sort of.

Sadness can be restrictive

Strange as it may seem, having mixed emotions can actually be a saving grace.

If we are sad over our Loved One’s suffering, but simultaneously frustrated at the doctors, angry at God or jealous of others, no one feeling has complete control.

After all, we’re only human, and cannot plumb the depths of ‘anger’ at the exact same time as we are reaching into the extent and intensity of ‘grief’.

With many emotions comes also many options for relief, more opportunities for someone to say ‘me too’.

Yet when we are simply sad, it can become all-consuming. We can easily develop ‘tunnel vision’, and our sadness may push aside every other happiness.

In one sense that’s okay. It’s not wrong to feel grief, and immense grief will be felt immensely.

But it can also be harmful, because we all need some measure of distance. Continue reading “The 3 dangers of being sad after a chronic illness diagnosis”

What I learnt when I cried in church

I hesitate to share this. It’s personal. It’s ‘deep’… and this is in itself is normally an indicator that I shouldn’t post it on the World Wide Web.

We’ve looked at why it’s okay to cry in public and also how to respond. Now this is my story…

My story of public grief (and what it taught me about God and chronic illness)

I believe it’s important.

This experience was one of the times I have seen God teaching me ‘in the moment’. It was a valuable lesson – and so I share it, not for sympathy or scandal, but so you might also see the God I saw that day.

Continue reading “What I learnt when I cried in church”

How to cope with grief in a public place

What do we do when we find ourselves crying in church? – Is this a silly question? I don’t think it is.

I like practical answers.

If something uncomfortable has to happen, I want to know how I can fix it (or, preferably, avoid it).

What do I do when I find myself crying? Is this a question that needs to be answered?

I think it is.

Why?

Because weeping in public is not a common occurrence in Western culture. We generally try to avoid it – and so when we weep in public it is because we are overcome with grief. Tears take us by surprise; we are unprepared.

And personally, I’d rather not be. So let’s think about it now, before we find ourselves in that situation.

What should we do when we find ourselves overcome with emotion in public place?
Continue reading “How to cope with grief in a public place”

Why I think it’s okay to grieve in Public

Grieving in front of people is not something we’re particularly good at in my culture. Weeping often happens behind closed doors, or in the arms of a loved one.

Yet when a diagnosis of chronic illness enters our lives, or the lives of our family members, it’s impossible to avoid public places, and often just as impossible to avoid tears!

As Christians, church is a public sphere where we may find it hard to contain our grief. For this reason I’m going to use it as an example, but most of what is written below can apply to any public space.

Firstly: should we even be trying to contain our grief?

I don’t think so.

4 Reasons we grieve chronic illness in public

1. We grieve chronic illness in public because we care

Continue reading “Why I think it’s okay to grieve in Public”

What to do when chronic illness makes you angry

Perhaps your father has been diagnosed with cancer, or your mother with Alzheimer’s, and you’re angry. Angry at everyone: the doctors, yourself, the people around you, the sick person, and most of all, God.

So what do we do?

Smash a few windows? Yell? Break down into tears? What’s the appropriate response?

Is there one?

How do you cope with anger after a chronic illness diagnosis?

What happens when we’re angry at a situation but don’t want to be?

Anger is harmful

I have no “5 Step Plan” to cope with the anger associated with chronic illness. I’m going to admit that up front. But I think it’s helpful to start by admitting that anger is not the best response.

There are more helpful emotions to feel.

I think we all know that. But is anger always wrong? Surely it’s okay to be indignant at injustice, or annoyed at pain.

There’s no simple answer here, no black and white. But we need to remember that righteous or otherwise, anger can hurt people. Anger can cause us to lash out, it can ruin relationships, it can tear apart community. If not addressed will linger and fester, and it will ultimately destroy us.

We should not cultivate anger.

Continue reading “What to do when chronic illness makes you angry”

After a diagnosis: Why anger?

A chronic illness diagnosis is emotional. We may feel sad, guilty, overwhelmed… and we can feel angry. Sometimes this is short-lived, but mine wasn’t.

Why are we angry?

Coping with anger after a diagnosis is not simple

Chronic illness and suffering is a sensitive topic, so let me use another analogy.

Say I stub my toe. It hurts. It makes me angry.

Why?

Anger over chronic illness is a reaction to frustration

Continue reading “After a diagnosis: Why anger?”

Help! People keep asking after my chronically sick family member…

“… and there’s nothing left to say.”

Chronic illness is…well, chronic. For the most part, not only does it not end, but it remains the same.

Of course there are changes, developments, progressions – but these are generally subtle in nature and may vary between individuals.

Perhaps our Loved One is slowly but surely declining.

Or maybe their sickness fluctuates without rhyme or reason. Some days they are well, others they are not.

Or perhaps there is simply no visible change at all, just a long, monotonous pain.
Continue reading “Help! People keep asking after my chronically sick family member…”