A few days ago, at the dialysis unit, I heard one of the other patients barking at one of the nurses on behalf of another patient who had started bleeding on account of the needle stuck in her arm. It seemed strange to me at the time and it still seems strange now – though the bleeder didn’t seem to be in any pain, or even really that bothered, the barker in question seemed to be genuinely indignant that a jab in the arm with a 15mm had led to its natural consequence. Where did this person think they were? A parallel universe where the fundamental laws of physics and biology had gone right out the window? Livin la vida loca in a swanky hotel somewhere? What was happening here?
Whilst there were no doubt other psychological factors at play, this incident epitomises the epidemic of unrealistic patient expectations that permeates the NHS culture. And, though it might seem trivial, a case can certainly be made for the idea that unrealistic patient expectations can lead to exacerbated problems for all parties: patients will ultimately be disappointed and nurses and medical staff will have to deal with this disappointment manifest in the form of irritation and altercation. Though I by no means advocate a culture of blind obedience and compliance for the sake of compliance (if something is wrong you should point it out), I do suggest that, as patients, some of us would be a lot happier if we became a little more aware of the realities of the situation we are facing.
Here are five ideas that have helped me to have what I consider to be more realistic expectations as a patient:
Realise that there are few absolutes in the world of medicine. Nobody knows anything with 100% certainty, including your doctors. – The way that the medical system has been traditionally set up means that we have imbued doctors and nurses (to a lesser degree) with an air of authority, omniscience, and omnipotence that is quite simply unwarranted in a society with a highly-educated populace (relatively speaking). Though we should of course respect clinicians and other members of NHS staff, we should not treat everything that they say as truth purely because we consider them to be sources of authority.
As a slight oversimplification, it is the nature of science that all information can be falsified at any moment, so in effect, all that most clinicians are doing is making educated guesses about your condition. I repeat: Nobody knows anything with 100% certainty. Though science is without doubt one of the greatest things to happen to humanity, facts remain open to interpretation by human beings who often have agendas and/or are fallible.
Though this is probably the opposite of what you want to hear when you have a chronic illness, it actually empowers you to play a more active role in the diagnosis of your illness. Don’t take what is said to you at face value, don’t blindly obey and follow if something doesn’t seem right to you. Do your own research, analyse your own experience and feel free to challenge your doctor like an adult when need be. Even if you are wrong, testing the clinician’s ideas about your situation with rational arguments will strengthen his own conviction and result in a stronger diagnosis and improved health for you in the long-term.
Understand that we live in a world where things can go wrong and will go wrong, sometimes without explanation – It is natural for us to assume that when things go wrong with our health, it is because of human error – either because of something we have done or because of something that somebody else has done to us. We also have a tendency to think that cause and effect are closely linked in time, failing to realise that there is a difference between cause and correlation, and assuming that just because two events happen at around the same time there must be a causal link. Acceptance of this fact can alleviate frustration when we are faced with unexpected problems on our health journey and open our minds to think more clearly: Sometimes looking for answers where there aren’t any can drive you mad. Eventually you have to learn to stop looking.
I can think of two applicable cases in my own experience. The first instance occurred when I was diagnosed with kidney failure in the first place; my natural inclination was to assume that I was being punished for something, perhaps by a deity or some other supernatural force. Though I don’t consider myself to be religious, the shock of sudden diagnosis made me seek reasoning behind what had happened to me and this seemed like the most logical (if you can use that word) way of seeing things. Unfortunately, this way of thinking made me acquiesce to my situation, flitting about passively instead of actively taking control of my life. It was only when I realised that sometimes ‘shit just happens’ and that the universe is ultimately indifferent to the lives of individual human beings that I was able to move forwards. Whatever happened to me from that point could be in my hands if I wanted it to be.
The second instance of learning to stop looking for answers was when my kidney transplant went wrong and the transplanted kidney literally burst within me for unknown reasons. Though the official diagnosis of it being ‘just one of those things’ didn’t please me very much, it did serve to demonstrate that pushing for answers in places where there aren’t any can only cause unnecessary conflict between patients and clinicians. Though my natural assumption was that the failed transplant was due to human error (and I will admit that I occasionally still wonder if this was the case), by realising that doctors and surgeons don’t have all of the answers (if they did we wouldn’t have medical problems) I was able to move forwards with my life and let go of the animosity that I held. As far as I’m concerned, these two examples show that unrealistic expectations can lead to unnecessary conflict.
We expect cause and effect to be closely linked in time, but something that goes wrong today could be the product of something that happened decades ago. Something that manifests as a problem in the system could actually be a product of the environment. Assume that everybody is doing their best unless you have clear evidence to the contrary and you will probably find that your relationships with them improve dramatically.
As an important side note, if the problems you face are technical errors such as bad needling, or perhaps petulant and unprofessional staff, then fight it by all means; just be open to the idea that there may be times in your life when things don’t go as planned and nobody knows why. Don’t seek blame when there’s no need for it.
If you have a chronic condition, pain and boredom are unfortunately inevitable. Prepare for both but accept neither, unless completely necessary. – The German philosopher Arthur Schopenhauer once defined life as ‘a constant oscillation between pain and boredom’. He was talking about the lives of all human beings, but his comments resonate especially for people with long-term health conditions.
Pain will sneak up on you like an old friend you’ve been trying to forget about in the form of various tests and experiments that are performed on you over the course of your medical career. In a manner of speaking the best way to accept pain is to consider the old adage ‘No pain, no gain’, quietly reassuring yourself that the gain in this case is your survival itself. Serious pain can be reduced with anaesthetic, but if all that stands between you the rest of your life is a jab in the pants every now and then, there’s really no point complaining about it. Accept it and roll over.
It is quite unusual to come across a doctor or nurse that wants to hurt you on purpose (although no doubt there are some out there), so when you are subject to pain accept it gracefully and don’t attribute it to malice. Smile if you can, and treat yourself to something afterwards (like a nice cry in a shadowy corner somewhere).
The incredible fact that you are not the only patient to be making use of NHS services means that boredom is inevitable due to the amount of time spent waiting around (for more pain, incidentally). Invariably, you will find yourself vegetating in pastel coloured waiting rooms, listening to the daytime TV blaring, and generally mingling with mumblers and complainers of all kinds. The key here is to pre-empt boredom and then fight it off when it encroaches upon you: read a book, use an educational app on your phone, write down your life goals, speak to the people around you about their interests, dreams, and aspirations. Try not to complain just to fill the silence and if those around you start doing this feel free to hide behind your headphones (studies have shown that listening to people complain needlessly can impair your brain function).
Preparing for boredom is especially important with conditions like kidney failure, where you will find yourself spending a great deal of time strapped to a chair. Don’t expect to be bored or you will be. Set yourself a difficult task and chip away at it each session – over time you will find that your mental life improves exponentially and you don’t feel so bad about the huge chunks of your life passing before your very eyes.
Change what you can, endure what you must (but prepare to be disappointed) – One of the most important skills that you can develop as a patient is to learn the difference between the things that you can’t control, the things that you can control, and the things that you might be able to control if you work on changing things about yourself or your situation.
The list of things that are out of your control may at first seem daunting, but that is only because you are spending most of your time focusing on these things. If you can’t change it, don’t waste time and energy worrying about it. Focus on improving the things that you can change instead.
Here are some examples of inevitabilities that you can’t do anything about:
Pain (Comes with the territory)
Boredom (Pain’s best friend)
The imminence of death (Yes, that’s the icy hand of death upon your shoulder. Best enjoy life while you can).
The fact that you are ill (No point worrying about something that’s already happened, might as well focus on how you can make things better for yourself within the confines of the new rules).
Here are some examples of things that you do have control over or will be able to change if you make an effort:
Other patients annoying you from time to time —> Be straight up with them and politely inform them. Don’t feel guilty if it all gets too much and you have to ignore people once in a while by hiding behind a book or your headphones.
Having to wait sometimes —> Take a book to read, organise appointments to coincide with others so you spend less time going back and forth between hospital
The fact that you are in a hospital and not a five-star hotel —> If you lack certain luxuries than ask family members to bring them in for you. Don’t complain that the FREE sandwiches on dialysis are too small, buy some crisps or something and add to the filling.
Things occasionally going wrong —> Don’t focus only on causes but also solutions. Don’t only ask WHAT, ask HOW.
The fact that there are limited resources and that there is not one nurse for each patient —>Take as much control of your own care as you possibly can, eg. on dialysis, learn to cannulate yourself. If that’s a step too far start small by clearing your trolley, etc. Doing things by yourself makes you feel better about yourself.
The fact that the old guy in the bed next to you has bad flatulence and snores likes a pig. —> Buy some earphones and a butt plug.
There are very few things that you can’t do anything about. No situation is completely hopeless. One thing that used to annoy me at dialysis was the sound of the various televisions blaring on different channels. One solution that I found was to add a soundtrack of white noise (static) to my iPod, which allows me to block out all other sound in the room and to focus on studying or working whenever I need to do so. There are all kinds of workable solutions for all kinds of problems.
You may find that some patients actually like having problems because it allows them to seek sympathy. Patients like this will happily bask in the opportunity to be bored or disgruntled because it gives their lives a misplaced sense of purpose. Try to avoid the trap of finding reasons for people to feel sorry for you. In the end you will only end up hurting yourself because you remain stuck in the same situation. Having lots of trivial problems to talk about doesn’t mean that you’re valiantly fighting the forces of nature, it means that you lack the fortitude to cope in the face of them.
Develop an ‘Attitude of Gratitude’ – Studies have shown that developing an attitude of gratitude towards your life can have health benefits as well as increasing mental wellbeing. I think one of the key points here is to realise that, despite the horrors of reality alluded to in the previous sections of this post, you live in a society that is technologically capable of sustaining you with a long-term health condition and that you live in a country with a free (at point-of-use) national health service.
With the scope for things occasionally going wrong during your medical career, it is easy to lose focus and to forget why you are actually using the service in the first place. If you’re a dialysis patient, for example, and all you have to worry about is the size of the sandwiches that you’re being given, or that you only get one cup of tea, instead of two, then I think it’s fair to say, that the quality of the service you’re receiving is pretty effective. Don’t forget why you’re there in the first place: to stay alive, not to stuff your face.
By rights, if you’ve reached the stage where you’re on dialysis, you can quite confidently say that you’d be dead without it. If you were born in a different time and place your options would’ve been exponentially limited. In this sense, every day that you live, no matter its ups and downs, is a gift. The attitude of gratitude means that you are grateful for it and learn to make the most of it.
Learn to be mindful if possible. Enjoy the small things like the sun on your face or the wind in the trees. Stop and watch the clouds once in a while, enjoy the smiles on the faces of strangers. Life is precious for everybody, but when you’re sick the clock is ticking a little bit faster. Make each second count and don’t waste time sweating the small stuff.