5 Things You Can Do to Win Back Ground from Long Term Illness
Chronic illness can be brutal to bear. And in the face of something which can be so dominating in your mind and your physical body, how do you stop it from taking over? Is there a way to avoid it stealing - not just from you but from those you love?
Here are 5 tips, whether for you or for someone you love:
1. Pursue Joy.
This is an oh-so-easily forgotten part of mental wellness and emotional health. When life hits rough phases we can become so consumed by the difficult and dark that we forget about the little glints of light and life that still exist in our world. It’s one of the perennial problems of difficult things: the evil and nasty shouts for our attention: pain, hurt and loss. It demands our focus, refuses to let up, dominates our world. The good things of life are much more gentle: love, laughter, the gentle warmth of sun on a nice day. It is so easy to miss or pass by the good things when our minds are full of the difficult, or to just become too exhausted to make space for things that bring us joy. Try not to miss them.
Did you know your brain has a negative bias? We are hard wired to focus more on negative things - experiences, memories, comments … It makes sense that these are the things we perhaps need to make sure we do not miss so that we don’t repeat our mistakes - but it can make the world feel much worse than it is - especially in seasons when negative or difficult things feel hugely dominant. Another nasty trick our minds can play on us is that when we are feeling a strong emotion or physical sensation like pain - or when in a powerful context or situation (in hospital, for example), it becomes much easier to remember any other times you have experienced the same thing, or been in the same context. So the very moment you need to remember that life does have brighter times, or reflect on times you were not in the situation you are in now, your brain brings to the surface everything you don’t want to think about. It can feel like that is all your life contains - but it isn’t true.
In order to balance this negative bias we need to make intentional and deliberate decisions and actions to reflect upon and recognise good stuff. Psychologists talk about the art of ‘savouring’ - pausing and making sure we do not miss good moments in life. I like to think of it like squeezing an orange - you want to make sure you get every last bit of juice out of it. Or when my kids lick out an icing bowl - they don’t do this half heartedly - they recognise something good and pleasurable there so they linger on it and scrape every last bit out.
How could you give more headspace to the good things today might bring? How much might it change your life if you spent as long reflecting on and giving headspace to those good things as you do worrying about or being dominated by the bad? It could be a small thing: a moment of laughter, a text from a friend, something beautiful or special. Like a hug, for example - did you know that a hug can trigger the release of the comfort hormone oxytocin? But this great gift of feel good warmth only happens if we linger in the hug for at least 15-30 seconds. So often we hug fleetingly - why not linger in the next one? Even count it?! (or if the person hugging you can be heard muttering numbers under their breath now you know why!).
2. Connect.
Did you know that built into the basic DNA of all human beings is the need to connect. The ancient Genesis story about how humans were created lists all the things God made and though were ‘good’ - but there’s one thing that is ‘not good’ - and it is the observation that the newly created human is ‘alone’. The ancient Hebrew word used here actually means ‘disconnected’ - and the story continues of course with the creation of other humans for company. Whether you believe this story is a literal truth or mythology - it teaches something important about people: we need other people to be well. And our 21st century medical understanding of just how important human connection is for us is only just catching up as we recognise the challenges of an epidemic of loneliness. But when you are unwell, perhaps confined to your house or even to bed, maintaining meaningful connection with others is very hard.
It’s worth taking time to think about - and with the key people, chat about - how you can work around this challenge and do what you can to stay in touch. The great thing about our 21st century culture is that we can use all the benefits of mobile comms - texting, social media, video calls. So, be creative! Think about what you can do and take little steps to keep in touch. It is so easy to give up when the kind of contact you long for is not possible - but you don’t need to settle for nothing. Remember connection is lifeline - even if it is far less than you’d like.
Meanwhile, if you are caring for someone who is long term unwell, the most important thing is to not forget to stay in touch. You may not want to disturb them when they are resting, but remember the forms of communication which enable them to respond as and when they are able. And be open to messages that don’t even need a reply if someone is not up to it - reach out purely for the power and purpose of connection and not necessarily expecting or needing a reply. But most of all, human, real life, ‘in the flesh’ connection cannot be beaten. Even if you pop over literally just to deliver a hug (remember, count to 15!) and leave again, or to drop off flowers or a card that visit is far, FAR from wasted.
3. Call out anxiety, grief and frustration.
These three horsemen of the emotional apocalypse unfortunately are the most difficult to manage, and unfortunately are commonly - and understandably - triggered by long term illness. They also share the same physiological pathway as stress and pain, harnessing the same combination of systems. Emotions like these are triggered when your brain detects something going on in your world which might be significant - for example the risk of something bad happening, or a goal or value you aim to live by being blocked or at risk. The emotion is triggered for three main functions: First of all emotions like these grab your attention - to make sure you focus on things you might need to do something about. Our experience of the physiological change they trigger is not pleasant - and this is deliberate. It is why anxiety in particular (which warns us of a potentially bad outcome) is so hard to ignore. Secondly, these emotions set us up in case we need to act or react - that well known fight or flight response. And thirdly, they trigger the analytical part of our brain to determine whether we do need to act or react - do we need to do something? Once we’ve decided this, in the ideal circumstance the emotion has done its job and therefore burns out, a bit like a flame burning down a match.
Of course the problem is emotions can feel a lot less constructive and a lot more powerful than this. Where long term illness is concerned there are a variety of reasons. Challenges with emotions can be about the number of them being triggered, like lots of matches being struck. If your mind is alerting you to lots of things that are potentially significant, you may find yourself hit with a barrage of negative emotion that feels relentless. Then there is the kind of analysis that is triggered in your thinking brain. Some of this is constructive and helpful, but in difficult times and situations thoughts are triggered which are much less easy to manage. These thoughts may trigger further difficult emotions, or simply be things difficult to resolve. Or the emotion may draw your attention to things which are indeed significant and painful, but about which you can do little or nothing. The difficult truth about long term illness is there may well be little or nothing you can do about most things your emotions alert you to - and this is a big challenge.
Emotions like these can feel less like little matches and more like they have set fire to much bigger emotional bonfires which can flare up very powerfully, or smoulder in the background. These emotions are difficult and painful, and we often instinctively try to ignore or suppress them. But their job is to get our attention, so they do need to be processed. The constant triggering of them raises our stress level - which may already be heightened by practical things like hospital appointments and medical tests etc, or physiological triggers like pain. In fact because they share the same physiological system, if your baseline stress has been raised, you can find yourself a lot more emotional than you usually would be. Think of the system on a 0-10 scale - if your baseline is already at 7, a 1 point raise on that scale pushes you into the upper end of the scale. Whereas normally these small things wouldn’t affect you, when you are unwell they can feel overwhelming. And there’s a final sting in the tail of such emotions. When our level on that scale is pushed into the 8-10 zone, we’re really in a kind of ‘worst case scenario’ area where your brain detects that you may need to not analyse but just react and get yourself out of danger. This means it literally starts to turn down your thinking brain, or bypass it, with physiological responses so strong you react first and ask questions later. This can leave us in a situation where we face blinding panic, frustration that makes us lose it or just depression, sadness and grief that we cannot see any way out of because our creativity is so limited by our emotion.
So - find yourself emotionally floored at the end of a long pain-filled day by a tiny challenge? Drop a cup and feel like your world has shattered? You’re not over-reacting - your emotional system is just overloaded. Resist the temptation to add guilt to what you are feeling and to beat yourself up for it. Long term illness is brutal. Your life has probably been transformed and your days may sometimes be filled with challenges. Find safe spaces you can process and express these emotions, and get help with dealing with them. Psychological approaches to long term pain often offer some support in this, and counsellors experienced in supporting those suffering chronic illness can also help. Or it might just be a good friend you can trust enough to allow yourself to be honest, and who will hold those feelings with you. Remember - you don’t need to fix things to help - just being able to express, be honest and for a short time admit to yourself and another human how rubbish this is will help. Hold out your emotions and let them be without any pressure to somehow change things.
4. Manage pain.
This is a tricky one because the effective management of pain is a complex art - and one we’re really only just beginning to understand. But it really does matter. So many people approach pain like it is a test of their basic emotional guts - can you ‘take’ it? Where’s your pain threshold? But our response and reaction to pain is moderated by how we are feeling in other ways: how tired we are, how emotionally worn we are, how well supported we feel, how much fear or uncertainty we feel. And our management of pain needs to take those things into account too. It is so much more than just throwing some medications at it, and in fact studies show most pain medications are a lot less effective than we would like them to be.
Pain is really important in your longterm wellbeing, triggering your physiological stress system (increasing the level of difficult emotions, see 3) and interrupting other vital coping mechanisms like sleep (see 5). Do what you can to manage pain effectively - rather than waiting until it becomes unbearable before taking medication try to take them consistently to create a good blanket over the pain, keeping it at bay. Watch out for breakthrough pain that might indicate it is not as well controlled as it should be. But do not restrict yourself to medication. If you have not yet had a referral to a good pain management clinic, ask for one. Remember - being referred to a psychologist for pain does not mean that people think your pain is all in your mind - it is about exploring the way your mind and brain respond to and moderate your experience of pain, and teaching approaches which can make the pain feel less overwhelming and unbearable. Give it a try.
5. Prioritise sleep and rest.
I know, you feel guilty. And bored. And frustrated. You’ve done nothing but rest for SO long, you think you might actually go crazy. But when you are unwell rest is important. In fact it may be the most important thing you do each day right now. So often we feel guilty foresting or view it as ‘wasted’ time. But rest - and sleep in particular - are part of your body’s toolkit to respond to illness and recuperate and recover, so do what you can to do them well.
Don’t be afraid to explore whatever approaches you can to help you sleep and rest better. If you need better pain management ask for it - if additional pillows or a different mattress might help, it is worth the investment. If sleeping in a seperate bed to a partner so you can move around and not be disturbed or worry about disturbing them helps, do it - even if you only sleep separately a few nights a week that can make a lot of difference. If we don’t rest and sleep well and valiantly try to go on, forcing ourselves to endure life in a semi conscious haze of sleepiness, we can become caught in a cycle of never sleeping well, dozing through our days and nights and never getting the best of either. You may not be able to sleep as well as you’d love to - but little steps to improve your sleep and rest patterns may make a bigger difference than you think.
Be careful about the temptation to monitor sleep or use apps to measure how well you are sleeping. There is very little research to show ANY beneficial impact of this, and there is plenty that shows monitoring sleep can mean you sleep less well. In fact anything that draws attention to sleep, or makes you think too much about it can make it more difficult. Research also tells us that our perception of sleep quality is very significant. Studies that manipulate the data on sleep apps to tell people they are either sleeping very well or not very well (irrespective of how they actually slept) demonstrate that people feel worse if they think they slept poorly. Ask youself: what am I gaining by measuring this? And be cautious.
Steal back ground …
Chronic or long term illness is an immense challenge, a cruel surprise and an unwelcome intruder on family, friends and life. You may not be able to make yourself well right now - but there are small things you can do to try to steal back some ground and stop it from taking over entirely.
I’ll leave the final words to a quote I love - from a book by a guy called Tim Keller talking about the challenge of suffering - and I think it sums up perfectly how we need to respond to long term illness:
“We are to meet and move through suffering without shock and surprise, without denial of our sorrow or weakness, without resentment or paralysing fear, yet also without acquiescence or capitulation, without surrender or despair.”
To read more about how to find contentment in the midst of long term illness, and how to manage the challenges of faith in times when healing has not yet come, I'd massively recommend 'Those who wait: Finding God in disappointment, doubt and delay' by Tanya Marlow and 'Catching contentment: how to be Holy Satisfied' by Liz Carter.