5 things you might not know about long term illness
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 - especially with so many people finding themselves fighting the challenges of long-COVID - what do you do when a period of ill health turns into something more long term? Here’s 5 things you might not know about long term ill health:
1 - Sometimes tough stuff 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? Wanting to know why you got long-COVID and someone else didn't? 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 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 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 [eople 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 (for more on this, particularly in relation to long-COVID, you might want to read this recent guardian article). 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 unable to explain the cause or understand the condition 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 are 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 any more 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 rough.
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 c are 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 lets 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.