‘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.
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!
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.
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.
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.
‘Relationships are built on trust’ – that’s a phrase you hear often. But have you ever considered that trust might be more than a necessity? That it might actually be one of the greatest gifts you can give someone, particularly someone who is living with a chronic illness?
The Oxford dictionary defines trust as the ‘firm belief in the reliability, truth, or ability of someone or something.’
Think about that for a moment. With this definition in mind, how would you feel if someone said, ‘I trust you’? I’d feel pretty good. I’d feel recognized, validated and affirmed. I’d feel more confident in myself. I’d feel challenged to ‘keep up the good work’. All that from three words.
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
A while ago someone I know was diagnosed with a chronic illness. After the initial diagnosis, she had to make an appointment to see yet another doctor. Before this appointment, I was chatting with her daughter and realised something rather abruptly: there is an art to accompanying someone to the doctor.
I’ve been to many doctors’ appointments in my life, both for myself and others. I’m neither proud nor ashamed of this, but I AM used to them.
And perhaps, not everyone is.
As a Watcher, a doctor’s appointment raises several questions: If it’s not for us, should we go? Is it important that we be there? What is our role? Are there reasons we shouldn’t attend?
Every situation is different and so is every person. I don’t think there are right or wrong answers, but I also think we can be a valuable asset at a doctor’s or specialist’s appointment. Here’s why:
I’ve spent quite a bit of time in hospitals, both visiting Loved Ones and working. It’s made me realise that visiting someone in hospital is not quite the same as taking someone out for coffee or popping over to see someone at their house.
In fact, for many of us, visiting someone in hospital might be a novel, somewhat unsettling experience. Perhaps we have bad memories of other hospital visits, or perhaps we’ve never been to one before.
For others of us, a hospital visit might seem easy and we don’t understand why we can’t just pop in at any time with whoever we like.
While neither perspective is ‘wrong’ (and I have held both at different times) they can both miss the point.
Visiting someone in hospital is not about us, how easy or difficult it is, or how it makes us feel.
When you’re an extrovert a chronic illness binding you to your home is an obvious torture. Yet what about those introverts among us? Is it easier for them?
Obviously there’s nothing ‘easy’ about having a chronic illness, but the question still stands: does a chronic illness impact an introvert in the same way as an extrovert?
And if so, what does this mean for us as we try and support our sick introvert friends?
I think the first thing we have to realise is this:
Sickness and introvert-ism are two very different things
Introverts recharge by ‘alone time’. If chronic illness means they spend large periods of time alone, well, surely that equals a lot of ‘recharging’, right?
Unfortunately it’s not that simple. Introverts do not get energy solely from being away from other people. Thus it is possible to be physically away from others but not re-charge.
You see, it is not restful to be alone but unable to think clearly. It is not relaxing to be alone but to have a pounding headache. It is not rejuvenating being alone when illness prevents you from dreaming and pondering and wondering!