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.
‘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?
How is Watching going for you? Are you in a season of relative peace or does it feel like troubles are knocking at your door and crowding out your view of Jesus?
Whichever it is, (and maybe it’s both!) I’ve been doing a bit of thinking lately about the most important reminders for our Watching journey. The theme of Called to Watch this year is Watching for the Long Haul, and so far we’ve reflected on:
But if there were two things I could always have at the forefront of my mind as I Watch, two things which would make a real difference to the way I Watch and equip me for the long haul, it would be these:
Sharing your life with someone whose every day is impacted by chronic illness can be rewarding – but it can also be extremely tough. It should come as no surprise that the most popular post on this site is ‘7 reasons why watching someone suffer is the worst’.
Watching is hard, and yet when it comes to surviving and thriving in long-term Watching, I think we often fall into 3 misconceptions.
3 misconceptions about Watching
1: Only people who are even-keeled, happy –go-lucky pragmatists can survive and thrive Watching over the long-term Watching. I’m not suited for this.
2: Watching is hard, and so I’m inevitably going to become cynical/bitter/depressed. It’s just a natural human response.
OR
3: When it gets hard, the Christian thing to do is ‘deal’ with it quickly, and move on. It’s not good to dwell on the difficulty.
Now there’s a certain modicum of truth in all of these. Some personalities might be ‘naturally’ better suited to watching; it’s understandable if you find yourself growing cynical or depressed; and it’s not particularly helpful to ruminate on your troubles.
How many times have you thought, ‘I just need to get through this, and then I can stop and pick up the pieces’? Or, ‘the only way on is through, so I need to get this over and done with as quickly as possible’?
While these attitudes might work for certain things, like getting through an essential task after receiving bad news, or even doing an unpleasant job like putting out the rubbish, they’re not great attitudes for the long haul.
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!
What a year. For many of you (myself included!) 2021 was supposed to be the year where things got back on track. The year where the ‘new normal’ (which has been spoken about for so long!) finally appeared.
I don’t know about you, but for me that was not the case. Australia went into its strictest lock-down so far (just under 6 months). Study went back on-line; the exhausting debate surrounding the morality restrictions/vaccinations arose; most relationships were maintained by phone-calls or zoom.
The introverts and the extroverts suffered; the chronically ill and the healthy; the front-line workers and the home-schooling parents. And this was only Australia – which in many ways had a wonderful covid situation compared to the rest of the world.
In the midst of all of this, it was interesting to see which posts on this blog were most popular. So, without further ado, I will continue the tradition begun here.
Maybe readership on this one soared due to the publication of my memoir Two Sisters and a Brain Tumour. Or perhaps everyone else has found navigating a relationship in sickness and health as difficult as I have! If so, I hope this post helped and will continue to help us all.
It felt like I wrote more letters and cards in lockdown than normally – I certainly posted more parcels (mostly copies of my two books!). I also noticed the impact of the pandemic on writing cards – everyone’s situation was so different, and our isolation far greater. Sometimes finding the words was just really hard – and it seems like you guys thought so too!
This is a perennial question – and one I’ve certainly struggled with over the years. What does the Bible say about chronic illness, does Jesus care, and where is God when everything is dark and awful? As I found out last year as I learnt the basics of Ancient Hebrew + Ancient Greek, God’s word is rich and varied and sometimes speaks in surprising ways, once we leave our assumptions at the door.
This post has possibly been the most contentious one on the blog – but I stand by my commitment to chronicling ALL aspects of life as a Watcher, even the unsavoury or ‘unChristian’ ones. It seems that in doing so, I’ve written something which continues to resonate with us all – and also continues to offer comfort.
Ta da! This post has been the most viewed post for a while now, and it was no surprise to find it at the top of the list when I checked the stats. The reality is, watching someone suffer is incredibly hard, and sometimes it’s hard to pinpoint exactly how and why, because it seems so obvious. Yet the more words we are able to find, the more encouragement we are able to give others, and the better we are able to pray.
5 year blog anniversary
So… here’s to 2022! This year marks the 5 year anniversary of this blog, and in response I’ll be posting a series of posts about ‘Watchers: In it for the Long Haul’. Chronic illness is often long and sometimes tedious and always exhausting. How do we, as Watchers, persevere? How do we look after ourselves, approach daily difficulties, and look to the future?
Stay tuned (sign up for updates!) as I seek to uncover some answers.
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?
Anne Carson
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?
I am.
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?
Looking for a Christmas present for the Watcher in your life (or yourself!) – please consider purchasing Two Sisters – so that it may continue to bless many readers.
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…’
A HANDY HINT: If you’re struggling to answer these questions (and even if you’re not!) it might be helpful to take a physical break from the situation. Prioritise setting aside an hour, calling in help, cancelling a coffee date, whatever you have to do.
It’s amazing how physically distancing yourself from the situation can give you emotional distance, and help you evaluate.
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.
Note: These steps happen best within the relationship, but sometimes that’s not possible. Most of them, you can still go through just with yourself and God, or perhaps a friend outside the situation. Leaving relationships as broken and as messy as they are when the breach of trust first occurred, is only going to be more painful in the long run.
//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.
