Supporting the chronically ill, living life and finding hope
Author: Emily J. M.
Hi, I'm Emily. Two of my closest family members struggle with chronic illness, and I watch them. That's hard, and so I write about life as a 'Watcher', what it looks like to support them and find Hope.
This year at Called to Watch we’ve explored what trust looks like in the context of chronic illness, and why it can be so difficult. We’ve uncovered what it means to trust others, to trust ourselves, and to trust God. For me personally, and I’m sure for most of us, this year has given us many opportunities to trust. The more uncertain life is, the harder it can be to trust, and the more important it is!
I recently read a poem by Anne Carson, titled The Glass Essay. This part stood out to me:
You remember too much,
my mother said to me recently.
Why hold onto all that?
And I said, Where can I put it down?
As we enter the holiday period, after a long year of Watching and living, are you holding onto too much? Take a quick assessment – are there worries you didn’t know you were stockpiling, frustrations you’ve swept under the carpet, resentments you thought you’d grown out of?
We all carry these burdens. But are you looking for a place to put them down?
Let us go together, to a baby born in a manger 2000 years ago. Let us go and place our ‘too much’es before Jesus.
Trust can change your life
We do not have to be enough, and we do not have to hold onto everything. Of course, it’s difficult to lay our burdens down. It’s a terrifying act of trust – will God be enough if I don’t plan for every eventuality, if I don’t have my anger to protect me, if I stop and admit that I’m exhausted?
He will be – the Bible promises us that – but we will never know that he is, until we lay down our burdens in trust. God doesn’t give us future strength for future problems in the present. He simply gives us what we need for each moment.
Choosing to trust can be life-changing – and what better time to let God change your life than Christmas, when the world was changed forever in the twinkling of a star and the startled cry of a new-born?
Sometimes in chronic illness and caregiving, it can seem like we’re doing it all wrong. We may feel guilty, ashamed, that we’re not good enough, or haven’t done enough. Maybe it’s because we feel as though we’ve run out of sympathy or we’ve moved away and can’t help as we used to. Are these helpful feelings? Are they even reality? And how do we know?
Sometimes it can be really difficult to discern whether our feelings are correct. We all feel guilty at times over things we have no need to feel guilty about, often because we have an inaccurate view of our role. We might even feel an acute sense of shame, as though there’s something wrong with us because we haven’t coped with being a Watcher as well as we think we should have, or as well as other people seem to.
If you’re in that situation right now, here are 4 questions to ask yourself.
ONE: What do the other people in the situation say?
Stop listening to yourself for a moment, and listen to the people around you, your family, your friends, your Loved One. What are they saying? Listen to their actions and body language as well as their words.
Do you get the impression that they think you’re not good enough?
TWO: What does an entirely objective person say?
Sometimes those closest to you see you differently to others. They may have unrealistic expectations or be holding on to past grievances. It’s important to find out what someone outside the situation is seeing.
Who can you ask? If you see therapist, counselor or psychologist, ask them. If you have a close friend or mentor who doesn’t know your family, ask them. It could even be someone you don’t know very well, such as a colleague at work. Just say, ‘Do you mind if I run something by you? I’m in a situation and I’d really appreciate an objective perspective.’ You’d be surprised at people’s willingness to listen – most people will feel honoured that you came to them, and flattered to be asked their advice.
Simply outline the situation, and then your feelings about the situation, and end with the question: ‘In your opinion, do these match up?’
THREE: What does God say?
Humans are fallible, and even the most objective colleague is going to bring past experiences and bias into the situation. God however, does not.
Read the Bible: what does it say about being a loving friend? How does the Bible define success or failure? What does the Bible say about sin, shame or guilt?
Think of Jesus’ interactions with the many individuals in the New Testament. Who do you identify with most right now? What did Jesus say to them?
Tell God the story. It’s amazing how clear the situation can become when we sit in the presence of God and tell him the whole story, knowing he already knows all about it, and loves us anyway. In the presence of God circumstances sometimes become less complex, because we begin to see them against the backdrop of eternity and the values and priorities of Jesus’ kingdom.
FOUR: If you were someone else, what advice would you give?
Although this is the last question on the list, it might be one of the first you ask. Often the advice we give to others is kinder and more objective than the advice we give ourselves. So often we hold ourselves to a higher standard because we are more invested in ourselves. This can be really helpful, but at times we need to take a step back.
One way to do this is to write out the situation, giving yourself a different name. Then insert yourself into the story: what would you tell that person?
Another way is to simply write out the situation using ‘I’ and spelling out all your thoughts and feelings. Then, underneath, write a letter to that past version of yourself. When I do this, I often end up writing, ‘If I could be with you right now, I’d sit beside you and give you a hug. Then I’d tell you…’
So… what now?
Your feelings were correct.
You are actually in the wrong in this situation. Not because you failed to be perfect, but because you failed to love. Run to our God who forgives, and with his help do your best to mend the situation.
Your feelings were incorrect.
Take it to God. Explain the situation. Talk it through. Take some time to recalibrate your perspective of yourself with his perspective of you! Take courage in the fact that God came to remove all shame and disgrace – even misplaced shame.
Uncover a nugget of Biblical truth and use it to combat these feelings when they resurface, such as ‘my worth comes ultimately from God, not anything I do or am’ (Romans 5:8).
Lastly, my friends, whether you’ve discovered you can trust your feelings today or you can’t, do not despair! We serve a God who always forgives and is able to transform all situations, feelings and people for his glory and the promise of a better world.
// Do you ever feel like a failure as a Watcher? After reading this post, what’s one thing you’re going to do today to address this?
We’ve talked about how to trust and how to be trustworthy in the context of chronic illness – even when it’s really hard. We know how important trust is, and what a gift it can be. But what do you do when trust is broken? When things don’t go as they should go, when words are said that can’t be unsaid, or when actions speak louder than words and the message they send is wrong and unkind?
It’s happened to all of us, and it will happen again. We trust someone, and we are let down. Or we let someone else down, and feel like we’ve failed them and ourselves as well. Or perhaps we’ve simply refused to trust for so long that our relationships lie in tatters around us, and our world is not the place we hoped it would be.
What do we do? Can trust be repaired?
I think so. Trust is a decision we make over and over, and so there are always opportunities to learn to trust again. We live in a world that is moldable, and full of possibilities. We serve a God who is able to work in impossible situations. Furthermore, people are not static, we are continually developing and changing and so relationships too can always change for the better. But how do we get there? Here are some steps you might find helpful:
ONE: Grieve that we live in a world where people are not perfect and trust is broken.
Grief is about acknowledging hurt. Nothing can be changed until it is accepted in all its complexity, and one way to accept is to mourn.
Grieve for what could have been.
Grieve for what can never be.
Grieve for opportunity lost.
Grieve for feelings hurt.
Grieve for broken relationships.
Grieve for a torn apart world.
Grieve that life is not as it should be. This might sound depressing, and a bit like wallowing in self-pity, but I want to maintain that it is important. The reality is, life is not supposed to be like this – full of struggle and brokenness and trustlessness. When we accept this, it is going to be painful, and there’s going to be some grief involved. That’s okay.
TWO: Define the situation.
Having your trust broken hurts. Failing to be someone who is trustworthy hurts. It can be really helpful to define the situation to yourself, as though you’re telling someone else. Aside from all the emotions and interpretations and meaning you’ve placed on things said or done – what actually happened? What was actually done? What was actually said?
It’s easy, in our leap to deal with the pain of a broken relationship, to assign blame wrongly. Take a step back, take a breath, and give yourself a chance to write things out.
THREE: Talk together about what happened.
Sometimes it’s better to wait for a while before bringing up the situation, sometimes it might need to be addressed straight away. Whatever the case, it can be helpful to define the desired outcome before you go into the discussion. What will make this conversation ‘successful’ in your eyes? This is important because so often we enter conversations with unrealistic expectations (the other person will apologise immediately with tears) and then we throw yet another emotion (disappointment) into the mix. Here are some expectations I find helpful:
This conversation will be successful if:
I listen to what the other person has to say.
I accept blame where appropriate and ask forgiveness.
We remain friends.
Sometimes the conversation is not going to be ‘successful’ according to our definition – and that’s okay! It may be painful, but it can be helpful to remember that you tried to fix the situation; God is ultimately in control; and there may be another chance for resolution.
FOUR: Make the decision to trust again.
Trust is crucial in relationships, and a beautiful gift. When broken, it can be really difficult to continue in a relationship, to make the effort to reach out, to be trustworthy.
There are times where it is not possible to trust someone in the same way again, and times when you will need to redefine your relationship with someone so that you can trust again. What is important is that we remember that we serve a great God. Trust is always possible in some respect and mended relationships can happen. Let’s face the future with hope, because while trusting will always be costly, not-trusting is even pricier.
//So what do you think? Are these steps helpful? Do they seem too optimistic? Too black and white? I’d love to hear your thoughts!
Have you read my memoir, Two Sisters and a Brain Tumour? It’s the story of (you guessed it!) two sisters, the diagnosis which turned their lives upside down, and ended up saving them. It’s a raw, honest account of hunting for hope in the darkness of chronic illness and caregiving, and finding laughter and even joy along the way.
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.
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!
Trust. It’s one of the greatest gifts you can give someone, but it’s always costly because there’s never 100% certainty it will end well.
So how do you make trusting your chronically ill friend a habit when there are times you really don’t want to, but you’ve asked yourself the questionsand you think you should? Before we explore the answer, let’s brainstorm some scenarios, because trust is never abstract.
It’s hard to make trust a habit when…
Your chronically ill friend..
… is going through a rough patch and you know you should ask how they’ve tried to fix it, and what resources they’ve drawn upon – but really, you think that’s a waste of time since you know exactly what needs to be done.
… wants to go with you to the party and say they’ll be fine – and you are almost positive they won’t be fine and you’ll end up having to leave early to take them home.
… tells you they’re feeling nauseous after eating carrots – and you think it’s all ‘in their head’ and want to roll your eyes every time they bring it up.
As different as these situations are, each prompts the question: will you choose to trust your friend, or will you trust in your own capabilities? You want to make trust a habit… but it’s just so hard. What do you?
How to make trust a habit
1. Ask yourself why you don’t want to
Making trust a habit is hard for all of us, and generally, it’s not something we instinctively choose. But what is it about this particular relationship or situation that you are finding so difficult? Sometimes our pragmatic reason (I’ll save my friend a lot of trouble if I just step in and fix it) is hiding a more subjective motivation (I like feeling in control).
If you’re having trouble trusting, try and voice the specific reason, and check for underlying motivations!
2. Alter your first reaction
It’s easy to get in the habit of cynicism, and assume everyone is lying, exaggerating or incapable of making a balanced decision. This sounds rather dangerous, but it can manifest in subtle ways: an incredulous ‘really?’ when someone tells you something you think unlikely; a quick scramble to find a different explanation when the one we’re given contradicts our assumptions; a disinclination to take someone’s story at face value.
I’m not talking about wisdom vs. gullibility. I’m talking about when our first reactionis to disbelieve someone rather than listen to the end, or ask questions, or to give them the benefit of the doubt.
Sometimes trust is as simple as swapping the ‘Really?’ for a ‘Really? Tell me more.’
3. Make a settled decision
This ties in with the point above. Most of us are not particularly good at trusting ‘off the cuff’. Perhaps, in one sense, that’s wise. But I think it’s important that we sit down and choose to make a settled decision to give as many people the gift of trust as possible.
Why? For me, it’s a way of honouring others as individuals, an exercise of trust in God, and because I want to live in a trusting world.
4. Give up regrets
For all of us there have been times when we trusted and it fell through. Perhaps the person chose to be untrustworthy, perhaps they couldn’t help it, perhaps circumstances outside of our control meant that our gift of trust spawned painful consequences. In light of that, it can be difficult to choose to make trust a habit.
I’m not saying it’s wise to keep trusting someone who has proved untrustworthy in high-stakes situations. I am saying that we can’t base our present decisions on past regrets. This situation is different because it’s here, now, not back then. When we give up trusting everyone and everything because we’ve been duped or disappointed, we hurt ourselves and those around us.
5. Say no to self-protection as a number one priority
This demands explanation. It’s wise to look after ourselves. But that’s different to making self-protection a priority at all costs. When we make self-protection our number one priority, we refuse to trust in any situation which could lead to hurt or pain or discomfort. We might still be willing to trust, but only when we won’t bear the consequences, or, at the very least, won’t bear them alone.
If we protect ourselves like this, we might live a less-painful life. But at what cost? The cost of deep relationships with others and with God, the cost of freedom and the cost of never experiencing the joy which comes from ‘bearing one another’s burdens’ and looking beyond ourselves.
A final word
Trust is hard and failure is common, but the good thing is that opportunities to trust come multiple times a day! It’s never too late to make trust a habit, and in the meantime, we have a good God who forgives us when we choose not to trust out of selfish motivations. He is always trustworthy and always ready to hear us when we need to talk things over.
// What can you do this week to make trust a habit?
Missed my Christmas Gift? To keep in the loop about my upcoming memoir, follow the link below!
‘I trust you.’ ‘I believe you.’ ‘Okay.’ Expressions of trust can seem simple, and can be a great gift to those who receive them. When we trust another person, we show respect, bolster confidence, and validate experience.
We are effectively saying, ‘I hear you,I believe you know what you’re talking about, and I am going to assume that you are capable and autonomous until proven otherwise.’ We are demonstrating a ‘firm belief in someone’s reliability, ability and truthfulness’ (thank you, Oxford Dictionary).
So far that sounds quite straightforward.
Yet in the context of chronic illness, trust can often be accepting your chronically ill Loved One’s assessment of their capabilities, believing their description of the situation, and assuming they have valid ideas, dreams and motivations.