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