I had an appointment at my diabetes eye specialist recently that I cancelled and re-booked. Once, I did that about 6 times, before finally going through with the appointment……The appointment has come again this week, and yet again I am sitting here deciding whether to go through with it, or postpone. The thing is, when you live with a chronic condition like diabetes, there are appointments. It is inevitable. My husband calls them the “ologists”. You know, the Endocrinologist, the Opthalmologist, the Gastroenterologist, the Psychologist, the Neurologist, the Ear Nose and Throatologist…well you get my drift. It can feel like you are on a never ending cycle of appointments, checks and measures. And each time you front up at one of these appointments, you can feel firmly placed in the role of being a “patient” rather than a person who happens to live with diabetes, or whatever other things you are dealing with.
The definition of “patient” according to google is:
adjective: able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious. “be patient, your time will come”
noun: person receiving or registered to receive medical treatment. “many patients in the hospital were more ill than she was”.
|sick person, case, sufferer, victim|
In many cases I have felt I am definitely “patient” when sitting in a medical waiting room filled with other patient people, scrolling on our phones or reading out of date magazines, while listening to easy radio tracks. I have on many occasion accepted or tolerated delays at the appointments, on some occasions even without becoming annoyed. I have been very patient when it comes to waiting for the silver bullet of an artificial pancreas or someone to work out how to solve the autoimmune problems of type 1 diabetes. I am also a person who is receiving or is registered to receive medical treatment – however, it is much more active than passive when it comes to chronic conditions like diabetes. We do not “receive treatment” – we work alongside our healthcare team, to take on advice and new information, seek guidance and make our own daily decisions about our management. We usually know more about our own body and how it is affected by all the things, than anyone else. We are most certainly very patient, as living with diabetes throws so many curve balls that you have to be.
But it is those synonyms – “sick person”, “case”, “sufferer” and the worst of all – “victim” – the insidious meanings that lie behind the use of the word “patient” in medical care, that do the most damage. In acute care, when you are really sick or hurt, you are indeed often suffering, or a victim of something that has happened to you – think heart attack, car accident, emergency appendicitis. I would have no idea how to give myself heart surgery or take my appendix out, or fix my broken leg. In those situations you need to be passive and rely on the experts who are treating the problem, to lead you back to health. But in chronic disease, when you live with something that isn’t going away, something that you have to learn about and then manage yourself each and every day until your ultimate demise – that is just not the same. You become intimately attuned to how your body does diabetes, and even then things can be chaotic. Sometimes your healthcare team has more up to date knowledge than you – they know about the latest research and methods of managing, they can see trends in your blood glucose levels where you may not have, or they have lots of experience with lots of people, which reassures you on your own journey. Often you also see things before them and unlike pre-internet times, can be ahead of them when it comes to tech advances and ways of managing. It is a much more even playing field.
After all these years of working in health and diabetes I don’t think we have really seen this idea of the “patient” in chronic healthcare shift all that much. There are many more “consumer” advocates, and we have much more transparent access to information and data. But are we truly involved in change and policy at the highest level of care? I see myself as someone who walks alongside and works with my health care professionals – those people who have studied long and hard to learn about the particular conditions I have to live with – as a collaborator. I see that we teach each other things, that when we have a conversation it is very much a two way one, and we should both take something from that interaction. Of course this varies from ologist to ologist – some of the people in my team are wonderful collaborators, and they walk fully alongside me, knowing when to advise, when to support, when to ask and when to tell. They understand me, they know me and they take time to ensure my whole self is feeling ok before I walk out the door. They look in isolation at the part of my care that they know about, but then they consider all of me. The ones who don’t do this differ because they still see themselves as the experts in my care, and they are certainly experts in their area of specialty, but they are not experts in me.
On the flipside, I am currently having some investigations for some symptoms I have had, that could be nothing, or could be something pretty nasty. I am having to be patient as I know nothing about this potential condition, and I have only just met the specialist. I am having to be patient while I wait for the MRI appointment (one of my nightmares after a panic attack in one years ago), followed by being patient for the results. I have to be patient. I also have to hand over power about my body in this situation because is it an acute situation, which I need to rely on the experts for. Therein lies the difference.
Some people may see me as an impatient person because I want things done yesterday and run a lot faster in life than some. Yet I have waited so very patiently for so many things in my life and when it comes to things like my children, or learning new things myself, I have a lot of patience. So why do I cancel and cancel and then finally go to some of these appointments that check in on diabetes related issues? Overall I think it is because I don’t like being placed in the position of being a “patient” when I am not sick. I think it is in part due to the reminders that these appointments bring that something could go wrong with my health. It is in part a reminder that things have indeed gone wrong with my health already, none the least, getting diagnosed with type 1 diabetes in the first place. But it is also that idea of losing my power, or handing over the reins to someone else, of being a “patient”.
Sometimes, when I am at a specialist appointment patiently waiting my turn to be weighed and measured and checked and probed, it takes me back to that little girl on the trolley bed, crying as the nurse yelled at me to “just do it and it will be over” as I tried with shaking hands to do my very first injection of insulin myself. Or the time where I was “transitioned” to the adult hospital and ended up with a pile of elderly people, sitting in a public hospital waiting room, with zero consideration of me as a person. Thank goodness that changed when I found my Endocrinologist, one of the most wonderful humans and doctors I know, who still walks patiently alongside me today – 32 years later as a collaborator and a friend. He is full of patience, and whilst sharing his knowledge with me, reassuring me, guiding me and checking in to make sure all is ok – he never considers or addresses me as a “patient”, but as a whole human being living with diabetes, who is doing an extraordinary job of managing it – and that is something to treasure.