‘I can’t do anything. I can’t leave the house. I can’t keep my plans… I’m useless.’
‘I’m useless.’ Who hasn’t felt that way sometimes? Often our Loved Ones with chronic illness, who can’t always do what other people can, can feel this more obviously. They may not use the words ‘I’m useless’ but if you listen carefully to their frustrations and yearnings you may hear it all the same.
‘I’m useless.’
How can we respond when someone feels this way in the context of Chronic Illness?
This is the first post in the series Responding to Misconceptions in Chronic Illness. Each one will begin with a statement about chronic illness such as, ‘I’m all alone’ and follow with a ‘letter’ from a Watcher in response. So without further ado, let’s begin!
Just as in previous years, what follows is the posts which received the most views in 2022. Have a look, you might encounter an ‘oldie but a goodie’ for the first time, or, like me, be reminded of posts you’d entirely forgotten about!
But first I want to introduce this year’s post series:
Responding to Misconceptions in Chronic Illness
As a Watcher, you might have heard your chronically ill loved one voice a sentiment along the lines of:
‘I’m no use to anyone’ or, ‘I can’t serve God like this’ or ‘I’m all alone, no one really understands.’
As a Watcher, everything in us often wants to cry, ‘no! That’s not true!’ — but is that best response? What do we do when our loved one keeps voicing these beliefs? Is a response even possible? Ought we protest each time? Are our responses even helpful? After all, we’re not the ones whose every day is impacted and restrained by poor health.
This year we will be exploring these questions and more, in a series of articles formatted as letters. Each one will begin with a statement about chronic illness such as, ‘I’m all alone’ and follow with a ‘letter’ from a Watcher in response.
One thing that may have stood out to you by now is that these ‘misconceptions’ are not the sole possession of our chronically ill friends! I’m sure all of us have thought them at times. For various reasons we’ve felt incapable, handicapped or restrained by various life situations, and thoughts like these slip out so easily. And so it’s important that we spend some time mulling over them in the presence of God, and ask ourselves whether they hold any truth and how exactly we ought to respond. I’m excited for this journey, even as I suspect it will be a challenging one for us all, me included.
But before we begin this series (a new article will be posted every two months) I have the pleasure of introducing the top pots of 2022!
As has this one! I quote: “Some things in life are opposites. They can’t coexist because they cancel each other out. Fire & Water. Tiny & Huge. Sometimes I am tempted to add ‘Sickness & Christianity’ to this list.”
These post are only a tiny selection of all the articles available on the Called to Watch website. Feeling bored? Navigate to the ‘all posts’ section and find more ‘oldies but goodies’!
// What was YOUR favourite post last year? Did it make the list?
Are you good at practising self-compassion? I have to admit, I never really felt like it was something I needed to bother with. I mean… I didn’t feel I was particularly hard on myself, and besides, being compassionate towards other people is more important, right?
Welcome to a new series for a new year! I’ve titled this series ‘Watching for the Long-Haul’. It’s going to include articles on how to care for ourselves as Watchers so we can continue to Watch, and continue to thrive.
Self-Compassion as Watchers
I think most of us as Watchers would agree that having compassion – sympathetic pity and concern for the sufferings or misfortunes – of our Loved Ones is crucial. But what about compassion for ourselves? Is it necessary?
Are you good at self-compassion?
You can take the Self-Compassion Quiz(it’s quite helpful!) but here are a few things I identified as possibly problematic for Watchers. Do you:
have an inner voice which tells you, you should be better. Better Watchers. Braver, more articulate, more patient… the list goes on.
often feel very alone in your suffering/situation – cut off from the rest of humanity?
motivate yourself by phrases such as, ‘don’t be weak’ or ‘I need to be strong’ or ‘I’m such a cry-baby’? Or even, ‘so-and-so wouldn’t be upset about this, so it’s silly that I am’?
suspect other people are happier than you?
get frustrated by parts of yourself? Such as the time it takes you to do something, your lack of skills in a certain area, your emotions?
If your answers to these questions are: yes, often, or frequently, you probably struggle with self-compassion. But is this a problem?
Why do you need self-compassion?
After doing some investigating, both in my own life and in the literature, here’s a few things I found to be true:
1. Self-compassion is Biblical
I recently read Try Softer by Aundi Kolber, and was struck by her image of Jesus. Sometimes it’s easy to be so familiar with the Gospels that we miss the very character of Jesus. He was kind and compassionate to sinners – and he is like that to us now. Yes, he teaches us, and sometimes the lessons are through hardships and suffering, but he is a never-ending source of comfort in that suffering.
Or take the Old Testament story of Jonah, and God’s compassion on the warring, brutal Assyrians. From a human perspective it was unreasonable and ridiculous for God to give these people a second chance, after the atrocities they had committed (and would go onto commit) – but God practised radical compassion, and did not destroy their city.
This God is the God Christians are in an intimate relationship with. So often, we feel we need to be harsh with ourselves – far harsher than God is to us. Yet when we do this, we mock his love. We’re effectively saying: God, I know you are kind, but kindness is not what I need. You are giving me the wrong thing, so I have to step in and be impatient and cruel to myself, because otherwise I won’t be enough, and my identity will fall apart.
Ah friends. We can embrace self-compassion, because in doing so we are allowing our identity to rest safely in the hands of our compassionate God.
2. Self-Compassion is good for you
Surprisingly enough, being critical of ourselves, or ignoring our suffering, is not actually good for us! If you repress your emotions or your pain long enough, it will explode in anxiety, depression, anger or other unhelpful ways. Lack of self-compassion means less resilience, and frankly, just makes us unhappy, and life tougher than it needs to be.
Part of being a good steward of the body and mind God gave you is practising self-compassion. We are not souls floating around, but people with bodies and minds and hearts and souls, and in order to be a Watcher for the long haul and live life fully, we need to care for ourselves.
3. Self-Compassion is good for others
Now you’ve probably heard the saying ‘you wouldn’t talk to other people the way you talk to yourself’. It’s a phrase used to highlight that often we are harder on ourselves than other people. While that’s often true, it’s also quite common to be just as harsh on others as we are on ourselves. We don’t let people ‘get away’ with things we wouldn’t let our self ‘get away with’. We are attuned to catch faults in others, because we are always picking them up in ourselves.
In becoming kinder to ourselves, we can become kinder to others. This is because we recognise that, ‘this person is annoying me, but I also annoy people at times – it’s just part of being human’. Or, ‘that person isn’t coping with this situation very well, and slowing us all down, but there are some things I don’t cope with very well either – so maybe I can be more patient.’
See how the existence of flaws or suffering doesn’t actually have to be the end of the world?
So how do I practice Self-Compassion?
Self-Compassion is simple, but like any habit, it’s a continuous practice. Contrary to popular misconceptions, Self-Compassion is not just being ‘okay’ with ‘everything’. Nor is it being lazy or embracing sin or destructive habits. Rather, self-compassion is an attitude to embrace in a moment of suffering or hardship – even if (especially if!) the situation is our own fault.
So, you might be wondering how I ranked on the quiz above. Well, it turns out that a) I wasn’t actually that great at Self-Compassion, and b) I needed it desperately.
I’ve begun practising it, and it has been good for me. It has led me into a clearer understanding of God’s grace, it’s made my thoughts (of myself AND others) kinder, and it’s led me to be more joyful and grateful for God’s amazing mercy and for other people. A ‘side-effect’ of practising self-compassion is that I’ve begun praying for blessings (silently!) for people I meet while waiting in queue or on public transport. I suspect it’s because I’ve realised anew how alike we all are, how much we all need Jesus, and how precious the sister- and brother-hood of all humanity truly is.
Self-Compassion is a big yes from me!
NB: I also get that it might seem simple/common sense/obvious. That’s certainly what I thought. But I challenge you, tune into your thoughts and the way you process events for a week – I’m almost positive you’ll find a place where you would benefit from self-compassion!
Last month, my memoir Two Sisters & a Brain Tumour was published! If you haven’t had a chance to get a copy, try the links below. In the wake of the launch and the post-publication buzz, I’ve been reflecting on the reasons I chose to wrote a memoir about such a vulnerable and difficult time in my life.
‘Sibling relationships are always part-joy, part-frustration, but throw a brain tumour into the mix and the rules for sibling engagement must be completely renegotiated. Emily’s recollections are simultaneously beautiful, amusing, tear-jerking, and wonderfully uplifting. You cannot read this book without being touched.’
The reality is, some words are bigger than other words. In 2015 the words ‘brain tumour’ loomed very big indeed. As a teenager I prayed two prayers about my younger sister. I’d prayed for her salvation, and I’d prayed for her friendship. I never expected God to answer them with a medical diagnosis requiring immediate surgery.
I was twenty-one, a radiography degree almost behind me, my entire life ahead of me – and all it took were those two words to change my world forever. For Christians Romans 8:28 – God works all things for good for those who love him – is often a deep comfort. As someone who’d grown up with a chronically ill mother, I’d hated that verse. In every reading it seemed to mock me, because I could not see the good – only the constant pain, tiredness, isolation. Yet when my sister was diagnosed I took hold of it with both hands – it was all I had left – and began a relentless search for ‘the good’.
ONE: I wrote Two Sisters because I wanted to capture the messy side of faith.
Ten surgeries, three months in hospital, life-long complications… and at every turn, with tears and fury and doubt, I hunted desperately for evidence of God working. We often speak of faith as a quiet assurance, a joyful confidence. I had none of that. What I did have (by God’s grace) was a dogged refusal to accept that the overwhelming darkness meant that God was not working. Sometimes, this is what faith looks like.
TWO: I wrote Two Sisters because I wanted to testify to God’s presence in the forgotten pockets of ordinary living.
The diagnosis of a brain tumour comes in an instant, an irreversible bolt of lightning, but it’s lived out hour by hour, day after day. While my memoir is certainly about ‘big things’ – brain tumours, chronic illness, sisterhood – it’s also, very consciously, about the small niches of everyday life. This is where the battles of faith are fought – in the car on the way to the hospital; on an empty seat at the back of church; in front of a public bubbler. God works in minutes, and therefore minutes are important.
THREE: I wrote Two Sisters because I wanted to explore what it looks like to love and be loved in times of illness.
Tragedy brings people together, but it also isolates. During those three months I felt too seen, but never known. For good and obvious reasons my sister and my family were frequent topics of conversation in my church community. People were kind and generous. Yet at the same time I felt separated from the lives of others by my sister’s diagnosis. My priorities, hopes, and dreams had been changed in an instant. I didn’t know who I was anymore, so how could I expect to be known?
Two Sisters and a Brain Tumour is the story of two sisters, and how God saved them through a brain tumour. It contains miracles, both ordinary and extraordinary. Yet it’s also an ode to steadfast faith, because God is faithful, and an encouragement to godly living in unseen moments, because God is there. Most of all it’s a plea to reach out your hands to others and to take hold of the hands reached out to you, to love and to be loved, because God has given us other people.
Sometimes, in the case of my sister, he even gives them back to us, and graciously offers a second chance.
In exactly ten days (as I write this!) the culmination of three years of work, ten years of writing seriously, and many, many hours of dreams, years and prayers, will be launched out into the wild.
That’s right! From August 28, 2021, you can be holding a copy of my memoir, Two Sisters and a Brain Tumour, in your hands.
Thrilled doesn’t even begin to describe how I feel – and I hope you’re getting excited too! To tide us all over until the launch, I’ve been posting a series of articles on my author website. They answer common questions, like:
As the publication date for Two Sisters comes closer, I’m beginning to realise how inadequate my memoir is. As a depiction of Watching, it’s painfully limited. It’s one person’s story, in one time, in one place. That doesn’t mean it’s redundant, but it does mean we need more. We need more well-written, engaging stories of our life as Watchers. We need more tales of tragedy and patience, joy and persistence. We need your stories, all of them, every single one of them! They might not all be published, but they all need to be told. In telling we confer a value onto our experiences, a value which they already hold in God’s eyes. Our lives are the materials with which he works.
Not only so, but stories create community, and community breathes hope. Loneliness is so often not the absence of people, but the absence of people with stories like your own. Every time you share your story to someone new, even if that story is two sentences long in a queue at the shops, there’s a chance you might change a life. We are all people who need to hear stories, who need to hear that we are not alone.
For this reason, it’s important that we think about our stories. We can’t tell them well, or share them helpfully if we bottle up our reactions and sweep away our experiences. On the other hand, a story pondered in the presence of God, is a story which has the chance to change the world for the better.
A few years ago I wrote an essay in answer to the question: Why Do I Write? I’ve included part of it below, because in the lead up to the launch of Two Sisters it remains as true as ever.
Why do I write?
…
When I come across a story like this, it changes my life just a little. Truth does that. Now, as I look back through the years, I see these novels [which changed my life] as one sees water drops sparkling in the twilight.
And so I write.
I struggle across the calendar pages, bearing this desire [to write] over my back, my own paper cross, a part of me which cannot be exorcised. Each year the numbered pages turn quicker and I fight harder to weave the stories I never got to read.
Not because I am confident I can, but because I have to try.
For I do not want them [life-changing stores] to be rare gems but common ones. Garden variety, preferably. When I close my eyes for a breath and still my aching fingers, I see people reading books and re-learning how to love and respond to others. I see communities sitting down and chewing over chapters and laughing as they cry, understanding that pain and loss are something we must talk about.
I see another thirteen year old, embarking on a quest, like all girls becoming women do, but her search is different to mine.
She is not hunting for my holy grail, she had no need to. Mine is splashed across the people and pages around her, ripe for the picking, glittering as a jewel.
For those of you who have been with this website since it started – way back here in 2016! – you’ll know that I occasionally share snippets of my life as a Watcher. I’ve filed these posts under the tag: Love in a Time of Chronic Illness:
I’m very excited to announce, however, that the time has come for something more than snippets! NEXT MONTH my memoir, Two Sisters and a Brain Tumour, will be published by D.O.L.L, an independent publisher of Christian women’s literature. Getting to this point has been a 3+ year journey, so I’m thrilled the launch date is coming at last!
Today I want to affirm that the benefits of trust almost always outweigh the costs! So, without further ado… here’s 3 (more) reasons to trust your chronically ill friend…
[If you want to understand how trust can sometimes look different in the context of chronic illness, read more here]
What’s your goal in troubled times? As much as we’re often told that it’s okay to simply survive, most of us, if we’re completely honest, want more than that.
We want to turn something bad into something good. Something worthwhile. Maybe even something precious. There’s a reason so many cancer tragedies end in the formation of an organisation or charity. There’s a reason we prefer tales of people who have overcome illness, rather than the much more common stories of being overcome.
Christians talk a lot about peace. So much so that it’s easy to feel like you’re doing something wrong it you’re not an unflappable yogi during trials.
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.
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
