The impossibility of being the ‘perfect patient’ when you live with chronic illness
The mail drops onto the mat with a loud thud. It’s a clinic letter summarising a recent hospital appointment. The phone rings. A medical secretary (finally!) calling me back saying that some lost test results have been found. My email pings. It’s confirmation of another, different, medical appointment, but will I call to double-confirm that I will attend?
As someone with multiple chronic medical conditions, my days are often punctuated by, or even completely revolve around, all things medical. My week is scheduled around medical appointments, tests and acting as my very own medical secretary — a job I am not trained for, have no desire to have and, of course, do not earn a penny to undertake. Every day I have to be attentive to medications, physiotherapy, the never-ending list of phone calls to make and emails to send regarding my position as a patient at many different hospitals and clinics. It feels hard to escape sometimes. This all-consuming sense of being ‘medicalised’, of being a perennial patient.
There are aspects of living with chronic conditions that are obvious, at least I hope, to most people: pain, fatigue, medications, appointments, to name a few. If someone were to think more on the subject perhaps they would also consider financial pressures, isolation, frustration and fear. Each of us experiences these aspects of chronic illness in different ways. We are, after all, not clones but individuals. My experience may differ dramatically from another person with the exact same health issues. But I think there may be some commonalities amongst us in the sense of feeling pressured to live our lives in particular ways by (often well-meaning) medical professionals.
One aspect of living with chronic illness that I would never have envisaged is the expectation to act as the ‘perfect patient’, both by medical professionals and friends, family, maybe even total strangers. With chronic illness there seems to come an expectation that I must do absolutely everything in my power to be as ‘well’ as possible all of the time. I must eat the right food, never slipping up with an ‘unhealthy’ treat. So kale chips are in; regular salted ones most definitely out. Physiotherapy must be practiced diligently and with full concentration. Never mind if I have been out all day at medical appointments and come home so exhausted that keeping my eyes open is a challenge, let alone doing stretches or movements designed to help my joints or vestibular system. Obviously, I must exercise to the best of my ability, carefully balancing rest time with walking, cycling, pilates or whatever activity has been ‘prescribed’ by my team of doctors, physios and occupational therapists.
Of course, all those lifestyle choices can be hugely beneficial. Personally I do try to ‘stay on track’ so-to-speak as much as possible. I see important life-changing benefits through keeping myself healthy. I am in no way disputing the positive nature of good food, physio, exercise or relaxation techniques. It is well-recognised that ‘lifestyle medicine’ is hugely advantageous to both the well and those with health difficulties.
But there is also the question of balance. Because it seems, from my experience at least, that people with chronic illness live in between a rock and a hard place. We have to try and simultaneously be two people, and live two different lives, all at the same time.
On the one hand, we have to be the ‘patient’. We must attend to all those ‘medical’, health and lifestyle things that come along with chronic illness; not just eating well and exercising, but also dealing with all the medical admin that comes along with chronic illness. All of that can feel like a part-time, sometimes even full-time, job. Yet on the other hand, we are also told that we should be our own ‘person’. That is, we should lead as full a life as possible outside of being a patient. So we should spend time with family and friends, engage in hobbies and other activities etc. We shouldn’t just focus on our health, and become only a patient, because that is detrimental to our mental (and perhaps also physical) health.
But when are we supposed to be our own person when the medical aspects of our lives take up so much time? When we are low on (o completely out of) spoons, to use the spoonie metaphor, and so are exhausted by the end of the day when all the ‘medical’ aspects of our lives have been dealt with?
There is, of course, merit to being both a person and a patient with chronic illness. Both are hugely important and I am in no way saying that one or the other should be overlooked or abandoned. But the simple fact is that there are only so many hours in a day, and so much energy in my tank. My spoons for the day are limited. So choices have to be made. While I will always take prescribed medication, and do my physio as much as possible, sometimes my life as a non-patient has to be prioritised. Some days physiotherapy will be shelved in favour of a good movie and some popcorn. Instead of doing physiotherapy, I will walk in the park with family and enjoy the beauty of the flowers and trees. Surely that is a form of medicine as well?
In the early days of being a patient, I tried to be just that — the perfect patient. I spent the vast majority of my time trying to be ‘well’. I felt guilty when I didn’t accomplish all my medical tasks for the day. Occasionally I was made to feel guilty when I confessed to a doctor that no, I didn’t do my physio exercises one hundred percent of the time. But it came to the point that I was miserable about only being a patient. I was stressed and tired from trying to gain this elusive state of wellness, which of course was detrimental to my health. So now I am honest that I do my physio 90% of the time, and not 100%. That I mostly take my vitamins, but occasionally forget, and that I will indulge in a ‘forbidden’ food a couple of times a month. Do I get a raised eyebrow from a doctor now and again? Yes, but for the most part I have put together a medical team that sees me as a person not just a patient. A team that understands that as a person I am fallible, or just plain forgetful. Most importantly, that as a person I am happier than when I am simply a patient with chronic illness, and that being happier will have a profound benefit to my physical and mental health.
Being a ‘perfect patient’ is, in my experience, an impossible person to be and an impossible role to play. For me, I aim to attain a bronze standard of being a patient, not the gold. I am going to going to concentrate on getting the balance right for me as an individual person with a life beyond the medical. I may have to be a patient at times, probably a lot of the time, but I need to be me the rest of the time. So now and again I will want someone to pass the regular chips and not the kale ones. Because sometimes they just taste better. And that puts a smile on my face.