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 five 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 eg), 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 halfheartedly – 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 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 – eg a 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?ˆ 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 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 emotion 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 operate 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 yourself: what am I gaining by measuring this? And be cautious.

Once your sleep is disturbed and you become anxious about it it is all too easy to get into difficult cycles and patterns around sleep. If this is you it may help to listen to my sleep talk at the Thrive Talks link listed below.

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.

You can find out more about how to manage anxiety, stress and sleep as well as other topics, in these talks from a series I gave about how to manage common wellbeing challenges called Thrive

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.”

Dr Kate Middleton is a psychologist, Director of the Mind and Soul Foundation and church leader at Zeo Church Hertfordshire. Her passion is applying psychology to real life, enabling people to reach their full potential and not just survive but thrive in life and leadership.

As part of the various roles I have held, I’ve had the amazing privilege to journey with people through all kinds of challenges life can throw. Bereavement, redundancy, tragedy – if there’s one thing I have learned in 20 odd years as a medic, psychologist and church leader, it is that no matter who you are, and how you live life, it can throw storms at you. But perhaps one of the most cruel situations to find yourself in is one that often goes unnoticed by many – that can slip into the background or fall out of focus for even close friends or family – and that is long term illness.

But apart from the obvious – not being well – what is it about long term illness which makes it such a tough journey? This is a really important question, so it’s one I want to unpack a bit in this, the first of three articles thinking about the challenges of long term illness.

There are three things, aside from the original illness that typically make life tougher when you are unwell over a longer period of time.

Isolation

The first and often most difficult thing that often follows developing a chronic illness, is a very sad but almost inevitable slide out of contact with the people who you would usually see regularly. Some of this is practical – you may need to stop work, or be unable to go out. But as time goes on it often becomes more than that. In general you see, we (that is those around someone suffering) are good at supporting people when they are acutely unwell. When the flu hits, or we break a leg – or even something more serious like a cancer diagnosis, the early days tend to generate a lot of concern, focus and support. We send messages, even flowers or meals, pop over – make sure people are well supported. And so, they recover, get back on their feet, or the treatment comes to an end. But what do we do if the illness persists? In particular what do we do when an illness is difficult to understand, or diagnose, or treat?

In those circumstances we tend to struggle a lot more in how we care for people – even though we generally mean really well. And it helps sometimes to understand the reasons. Firstly, there are simple practical challenges. We are good and diverting our busy schedules in the short term when people have needs – and particularly if we can see clear things we could do to help. Grabbing some shopping or picking some children up from school – we can happily incorporate this into our lives. But it becomes much more tricky the longer the need continues.

And of course the longer the need continues the more something else happens: it can become invisible. Unable to be part of normal life, people can simply disappear from the awareness even of those who care for them. Long term illness challenges us to keep someone in our present mind – even when they may be unable to physically present with us. So the awful truth is – people can become forgotten.

Finally, it’s important to acknowledge some psychological patterns that influence our response. Unpredictable or difficult to understand circumstances – particularly if they come out of the blue and affect people – well, much like us – trigger an inevitable anxiety response for friends and family. On some level we’re faced with a challenge – could this happen to me out of the blue too? This challenges our basic belief that the world is predictable and fair – that if we do things right we can keep ourselves and our families safe.

So, people can respond in two ways – of which the most common is to psychologically block out the people who cause this difficult challenge – through no fault of their own of course. This might be intentionally – failing to respond or dropping out of touch – but more commonly it is an apparently accidental forgetting – a failing to chase and follow up on someone who has dropped out of life. The toughest thing to deal with though is the third form this can take – in order to preserve our belief in a just world, we have to believe that the person enduring pain or suffering in some way did something wrong. So, we suggest improvements to their diet, imply criticisms of them, gossip with others about how if it were us we’d never have responded that way. It’s not meant to be horrid, but of course it is devastating to the person on the other end.

All of this means that when we suffer chronic or long term illness we are dealt a double whammy. Not only the impact of the illness, but the emotional and relational pain of dealing with the massive impact on our life. The friends lost, the life we can no longer be a part of, the opportunities lost. We deal with the presence of so many things that trigger difficult emotions and simultaneously have lost most of what would normally trigger positive emotions. We lose relationships and people contact that would have been supportive, in the very time we need them the most.

Emotional/mental health impact

This is often when the rubbish really starts to hit the fan – because not only are we unwell physically, but a degree of emotional and/or mental health struggle gradually becomes almost inevitable. You just wouldn’t be human if you didn’t experience all of this as the awful agonisingly cruel situation it is. Emotions build up: many people manage amazingly at first. But as we get more tired – particularly if we are also dealing with chronic pain (which triggers a very real same physiological stress response on the same pathways as emotions like anxiety and frustration so can add to our emotional load) , we all have a breaking point.

The topic of mental health as it relates to long term illness can be a controversial one. Too many people have had experiences of people assuming their illness has a psychological cause (see number 3 below). Seeing a mental health impact of severe illness like depression or anxiety can also cause friends and family to start to attribute this to be the cause of underlying symptoms – particularly if the true root cause is hard to identify. But the truth is that whilst almost every person I have ever known who has suffered with long term illness has also had to struggle with emotional ‘side effects’ of the impact it has had on them, I have not personally known a single case where those emotional symptoms were the cause of their underlying illness.

This doesn’t mean we should neglect to treat or intervene emotionally however. You are a whole person, not just a walking body detached from your emotions – how you are feeling emotionally influences your physical wellbeing and your response to things like pain. We all know if we are feeling ill, how much simple comforts can sometimes lift our spirits and make it easier to bear. And of course the opposite is very true – if you are physically unwell something like creeping dread and anxiety that begins to haunt you can make things very much worse. And it isn’t just about how you feel in yourself – emotions like anxiety and frustration trigger your physiological stress system – a very real biological system in your body coordinating responses across many different organs and systems. Chronically raising the level in that system changes those systems – and can make some physical illnesses worse. So it is very important we don’t overlook the significance of the emotional impact long term illness has.

Correct diagnosis and treatment

The third thing, very sadly, that can make long term illness much worse is the battle so many people have to find good medical care – most notably the correct diagnosis and treatment.

If your physical illness is difficult to diagnose or treat, or even understand – as so many are – if the medical system is not able to explain your condition, or disagrees about it, or if you find yourself on the edge of current understanding or medications – you suddenly find yourself vulnerable to what I would call sloppy medicine and sloppy psychology – simply blaming physical signs and symptoms on a psychological cause because the two seem to coexist. Alternatively many people have experienced Doctors who simply refuse to take symptoms seriously, putting them down to general causes like ‘stress’, and failing to investigate properly.

The stress of battling medical systems and professionals is now becoming much better recognised, but that does not reduce the impact it can have.
I have seen many people who I would describe as traumatised by their experience of poor medical response to their predicament. I have also seen many people who experienced a significant delay in their diagnosis because of a failure to take symptoms seriously. I am afraid the truth is the vast majority (although not all) of these patients were women – and research confirms that it is women who are more likely to face these battles. With the work of some fantastic patient groups fighting injustice in significant areas of women’s health and moves to focus directly on changing attitudes to women’s health and pain, we can only hope and pray this changes.

So – if you are struggling with long term illness yourself, what does all this mean. The most important thing I want to do is validate what you are thinking and feeling. Too often we take the struggle we are already experiencing and on that heap other things like guilt, condemnation or fear. When no one can explain why we are ill we too can start to delve too deep into our own minds. Maybe this IS my fault? Maybe there IS something wrong with me psychologically? Maybe I SHOULD be stronger, or less of a wimp. Maybe if I just pushed myself more I could be ‘better’? Please don’t beat yourself up for being human. We must stop believing that strength is all about perfection and the absence of struggle. Some of the most amazingly strong people I have ever met are those barely able to leave the house due to long term illness. This is not weakness. Living life in the most difficult of circumstances and finding a way to get through is amazing strength. Sometimes the strongest thing you can do is admit that today you cannot do it and allow yourself to stop.

The second thing is that this means our journey through long term illness utterly needs some key other people. It might be the brilliant friend(s if you are lucky enough to have more than one!) who truly understand what you are going through and how to support you – who will doggedly and determinately stay in touch even through the tough times. It is likely to be the good doctors and professionals who will help you to manage your illness – but these take hunting for so don’t just accept the first ones you find especially if they are not great. Remember, you can ask for second opinions, try to see a different GP, ask your practice who has a special interest in this kind of illness – look around and ask others who has helped them. Finding the right medic can literally transform your future so don’t be afraid to do it – or feel like you are being unfair on the Doctor who is not treating you well. This is your health so be assertive and find the person who can help you.

Thirdly don’t forget that progressional support is about more than medicine in a season when your emotions will be pushed to the limit. It may well be that you will benefit from some additional help with your emotional wellbeing in this time. A good counsellor, or even a psychologist with an interest in aspects of chronic illness can be worth their weight in gold. Other therapists can also be tremendously helpful with managing stress and anxiety and frustration – whether it is alternative approaches like mindfulness or relaxation skills, or simply things that help you feel better like therapeutic massage. Again don’t be afraid to be creative and look around – find what helps you and then prioritise it.

And finally – a word about patient support groups. These can be absolutely amazing – finding other people who have been through what you are going through and who have experience and knowledge is WONDERFUL! Facebook is amazing for this and it may well be you have already joined a group of people journeying a similar path to you. But remember – take the positives but beware of the negatives. Two important negatives to watch out for: be careful, especially when you are enduring long hours on your own or stuck looking at the same four walls, about spending too much time on patient groups. It is so easy to become caught up in your illness and for it to become dominant – and this can contribute. Perhaps set some limits on when you go on and stick to once a day between certain times – even set a timer! The second thing is part of why this is so important – remember the golden rule with patient groups: the people who are on them the most are the ones who are having the most difficult journey! The people who get better and do well do not tend to be on there because they are out living their life. This means when you read patient groups you get great advice but also see the worst case scenario for your condition – the most depressing situations, the unusual side effects, the toughest outcomes.

These groups are an amazing source of support when it is you experiencing them, but can generate tremendous amounts of anxiety for things that almost definitely statistically you will not experience. And this is doubly important when we take into account the emotional impact of what you read. Heard of the placebo effect? It is well recognised that if people think something is going to help their symptoms it often does even if it is not even a real medication. But there is an equally well recognised nocebo effect – if we think something is going to cause side effects it is much more likely to. SO be careful how much you read and watch out for signs your time on groups is causing more anxiety than it solves.

Long term illness sucks – finding that your own body suddenly becomes the thing that limits you and holds you back from the things you long to be doing. But there are ways to manage the challenges it brings – to find the promise and potential even within pain and challenge.

To read more check out the other two articles in this series:
5 things you might not know about long term illness
5 things you can do to win back ground from long term illness.

Dr Kate Middleton is a psychologist, Director of the Mind and Soul Foundation and church leader at Zeo Church, Hertfordshire. Her passion is applying psychology to real life, enabling people to reach their full potential and not just survive but thrive in life and leadership. For information about speaking, seminars and coaching see stretch-your-life.com

It’s never nice being unwell. We can all be guilty of taking our health for granted, and only really thinking about it when it lets us down. But what do you do when a period of ill health turns into something more long term? Here’s five things you might not know about long term ill health:

1. Sometimes crap just happens

It is such a human instinct to want to try to understand the why when difficult things happen. We long to believe in a simple world where A causes B – and if we don’t like B then getting rid of A solves it. But we all need to accept the difficult truth that in our 21st century world there are complex illnesses, infections and diseases which are beyond our understanding and that can strike people almost at random – that do not follow this simple pattern or rule. Trying to understand why you or someone you love developed their illness? It is so tempting to try to put it down to something – working too hard, not eating the right things, something they did or didn’t do right. But the truth is, it may just be terrible bad luck.

This is very important not just for you if you are the person who is suffering – but if you are a friend or family member of someone who is unwell. Sometimes our psychology is so set on hanging on to that simple ‘A causes B’ illusion that we slip far too easily into believing things about someone who is unwell which basically protect us from the uncomfortable truth that such random misfortune could also strike us. It is easy to think of things that you would have done differently, or do differently to the person who is unwell – but that doesn’t mean this is why they got ill. Don’t fall into the trap of an over simple perspective on causality – long term illness is so much more complex than this.

Does this mean it could happen to you? In theory yes. That is tough to understand, difficult to get your head around and hard to tolerate – but don’t make the person who is already suffering the scapegoat for it.

2. An emotional or psychological impact of long term illness is often inevitable, but is not the fault of the person struggling, or (usually) the cause of the illness

If you are unwell yourself, hear this one thing above anything else you might read in this article: you are not at fault for finding this tough – it IS tough. Long term illness is often AWFUL, brutal, relentless, gruelling, exhausting and cruel. Nobody would be able to endure that without it having an emotional impact so don’t feel bad, or let anyone else make you feel bad for finding it hard.

All this means that many people do find that there are times when they really struggle alongside their illness, with their mental health. Emotions like anxiety and depression are common, especially when an illness has dramatically changed what everyday life looks like for you. This is not a sign of weakness – it is a sign of being human.

If you know you are in this place, get some support to help you deal with the emotional impact of what you are going through. This may be about professional support or just some safe people and spaces where you can express and share the awfulness of what is happening. Other approaches may help you manage stress and anxiety – explore things like mindfulness or relaxation, and don’t forget that it doesn’t need to be complex – anything that helps you feel something more positive is a good thing, so do as much of whatever that is as possible.

A word on the thorny issue of whether there can sometimes be psychological causes for unexplained physical symptoms. There are two situations when this can be the case: firstly when neurological symptoms are related to psychological responses – usually to historical trauma. This is rare, and probably rarer than most clinicians would like to think in my experience – but certainly possible (for more on this controversial but fascinating field I’d recommend the somewhat provocatively titled but thought provoking ‘It’s all in your head’ by Suzanne O’Sullivan).

The second, much more common situation is when long term stress, often related to emotions like anxiety and/or anger and frustration or unresolved trauma can result in physical symptoms because of the long term impact of raised stimulation of the physiological stress system (‘When The Body Says No: The Cost of Hidden Stress’ by Gabor Mate is a good exploration of this in more detail). Your body simply isn’t designed to cope with this kind of chronic raising of activity in this system and it can have real physical effects.

Please note however that neither of these are what I commonly hear from those fighting long term illness: when doctors are unable to explain the cause or understand the condition they fall back on lazy medicine and declare it ‘psychological’. This is bad medicine and bad psychology – and devastating to patients because it often signifies an excuse for doctors to stop looking for underlying causes, or to withdraw hope of treatments. Psychological causes cannot trigger physical signs and abnormalities, and the diagnosis of these rare psychological cases for physical symptoms requires that infective or other biological causes or abnormalities are ruled out first – so to persist with such diagnoses in the presence of abnormal tests (or as is so often the case inaccurate or unreliable testing) is simply not good enough.

It is very important that we don’t use psychology to try to explain the gaps in our medical knowledge. Many patents have been told their symptoms are psychological only to find a better doctor with more extensive experience or knowledge who then is able to treat and even cure often debilitating conditions. This means it is, as usual, the most vulnerable and least able to fight their own corner who often suffer the most due to this poor misunderstanding of the interlink between emotional and physical health.

3. Life is not black and white, neither or people and neither is health

Our culture loves good clear cut categories. People are either good or bad, successful or failures, heroes or villains. The problem is life is rarely like that, so to try to see the world in that way pushes people into unrealistic categories. This is particularly true when it comes to health and wellness. Increasingly we are encouraged to pursue a perfectionistic model of health and fitness chasing extremes. It isn’t good enough anymore to just run a bit for fitness – you should do marathons. If you ride, it is assumed you should move onto triathlons. Diet too has moved towards narrower and narrower aims, with extreme, so called ‘pure’ or strict diets the thing to pursue rather than the honest messiness of healthy normal eating.

The problem with these models is that only a small percentage of people can achieve the aim. The majority of people fall short – and in black and white models this can feel like failure. In health terms it means that we aim not just at reasonably well, but at a kind of super fit superhuman healthiness – and many of us find this just isn’t real life – particularly as we age. Most of all this means anyone who discovers that life comes with a long term struggle against background illness finds themselves outside of what is considered good living. Black and white attitudes to health can also lead us to ‘opt out’ if we feel the golden standard is unachievable, or doesn’t apply to us. And enabling the opportunity to make good steps to improve health – wherever you find yourself on the line at this moment – is important for us all.

We need to stop pursuing a perfection model of health and recognise none of us are either ‘well’ or ‘unwell’. Life is about a line with good health and one and end ill health at the other and we all move up and down at different times. The vast majority of us find ourselves in the grey somewhere – grateful for aspects of good health but managing other challenges. We must not forget those who are in seasons where they find themselves much further down the line than they would like to be. The more we champion a superhuman way of living – looking up to the apparently amazing people who seem super fit super healthy, super capable the more we damage and hurt people who are not right now feeling that great. And remember – what goes around comes around – it could be you next month needing the help, seeking support or feeling rubbish.

4. You are MORE than your illness (or your wellness)

In a culture that worships perfection, it is all too easy for our health, wellness and fitness to become intrinsically linked to our sense of identity. The temptation to build part or all of your self-concept on your ability to be well is strong – and the pursuit of extreme sports or dietary regimes can become very much a part of how people see themselves, not just their lifestyle. We see this demonstrated in celebrity culture where individuals publicise and recommend their own regimes as an opportunity to be more like them and (apparently) experience some of the extreme perfection they model. The problem is, this just isn’t real life! And more than that, if we celebrate and value people only for their superhuman perfection then we risk implying that we have no value if we are not able to achieve or pull off these amazing feats. People are worth what they are for things that are much more important – the people they are, the way that they love, the experiences we share – simple human values like friendship. And the real beauty of these things is expressed not in the triumphant clean, tidy moments – but in the times life gets messy and rough. As Martin Luther King said: “Only in the darkness can you see the stars”

There are perhaps no times when this is more important than when normal life becomes under the pressure of illness. Want to see true friendship? Look for the person who will still be with you at 4am in A&E, or who will answer the phone when you are blubbing too hard to speak, or bring you soup when you’ve not been able to get out of bed for a week. – that stuff isn’t as glossy as the nights out or the celebratory times, but it is where the most powerful and precious form of love and friendship is expressed. And the same is true of ourselves. Want to know who you really are and what really matters to you? We learn a lot when life is stripped down to its essentials. How do you not just survive but find a way to thrive when so much of your life is limited by your illness? Can you find contentment when there is so much to be discontented with – so much difficulty around you? Who really are you when the opportunity to perform and achieve has been cruelly removed from your grasp?

None of these are easy questions, and the exploration of them isn’t something most of us would choose. But it does mean that some of the people with the greatest depth of understanding of themselves, and their friendships, are those who have experienced long term illness. The challenge is brutal – but if you can find a way through it there is something beautiful to be discovered here. Think about the things your illness cannot steal and celebrate them – even if they can only be expressed in the tiniest terms. I remember a conversation with a doctor who specialised in the care of patents who had suffered extreme and debilitating injuries – often brain injuries – leaving them dependent on round the clock care. What he shared was that although we might expect these patients to have very poor quality of life, and perhaps even want to end their life, in face he found they had discovered unexpectedly the value and importance of life in those terms and the majority celebrated what they had and wanted to maintain it.

5. Recovery is a tough climb – and may not always be part of our journey

Just as illness and wellness isn’t black and white neither is recovery. But again our understanding of it can be simplistic. This particularly comes out for those who love someone who is unwell and so desperately want them to be well again. The constant questioning ‘how are you’ – ‘are you any better?’ etc. comes from a good place but reveals that desperate hope that this might be over. The risk is that for the person suffering this feels like a criticism – why aren’t you well yet? Haven’t you solved this yet? Small positives – a better day, or the massive work it takes to perhaps manage to attend part of an event like a wedding (which of course is probably followed by significant relapse which no one sees) trigger a gush of relief. ‘Its so good to see you looking so WELL!’ … ‘Wonderful to see you are doing so much BETTER’ etc. Again our human yearning for a simpler story comes through – we just want to know that at some point the magic trigger will be found that rescues you from your predicament and from then on recovery will be a smooth, upward journey – and preferably as quick as possible.

Of course the truth is that recovery is far from that straightforward journey. In face the ups and downs of the path can be emotionally brutal. Few things are harder than a relapse when you thought you were getting better – when you thought your days of pain were over. Hope snatched away is devastating to bear, and recovery almost always involves highs and lows, ups and downs, troughs and peaks just like this. And usually the visible moments are the triumphs, so it can be hard to know what to say about the times no one sees. How DO you answer that most tricky of questions ‘How are you?’ – it really isn’t a short answer!

Recovery may not even feel like it is part of your journey right now. Maybe it feels more like an adaptation to a new normal. Many illnesses or conditions are not ’curable’ – but modern medicine offers us the chance to live within those conditions and to explore new ways of thriving over what may be years. This requires so many difficult skills – learning to accept a new normal, grieving what you have lost, adapting to new abilities or situations, managing the ever present anxiety and the unpredictability of symptoms day to day. All of this takes great strength at a time we may well be the most exhausted – so even the strongest need help – and this may be professional, from psychologists or counsellors specialising in supporting those working through long term illness.

Let’s be real – long term illness sucks. But the most important thing to remember is that the absence of any illness at all is not a necessary requirement for happiness and good life. It is possible to learn to thrive in the grey areas, with our human brokenness an everyday part of our experience. But to do so will require a conscious rejection of so much of what our culture tells us about what good living really looks like and a deliberate celebration of things which are perhaps more subtle, more difficult to grasp and more rare to experience in all their true beauty. Let’s choose to seek out and to celebrate these things: the beauty of potential within pain, of friendship in the midst of fear and trust and commitment in unpredictable or challenging of times. The small wonders of being alive – beauty in creation, pleasure and contentment even when it is fleeting and the gift of real human connection when we get to experience it. And let’s not lose the voice of people who due to the most difficult of circumstances have a unique and valuable perspective on all these things to share.