From medical student to patient: my NHS Change Day post

I started medical school in 2007 wanting to 'make people better'.
I stopped medical school in 2010 facing the reality of not being able to get better myself, being ill and later being diagnosed with several long term health conditions.
This post is about my transition from being a medical student, to the other side - being a patient. There are many things I wish I knew about long-term health conditions and patients when I was a medical student. I hope that through this post, current medical students can become aware of some of these things and put them into practice as doctors themselves.
I went to medical school because I wanted to help people and make them better. I admired doctors up on their pedestals for their knowledge and skills and expertise to 'fix things'. The hardest thing for me was accepting that doctors can't always make people better - they couldn't make me better. Holding doctors so highly meant it was very difficult for me to accept their limitations when it came to incurable long-term conditions and then to accept that as a patient I had capacity myself to help my conditions and situation.

Having studied medicine at a very academic university, I had a very strict perception of knowledge. Knowledge was hard and fast medical facts that were taught in a formal setting. I worked all day and night learning the anatomical names for all the muscles in the eye, the cranial nerves and citric acid cycle, not to mention the pharmacology in second year. Being immersed in that academic scientific environment, I correlated expertise with PhDs and papers. It was a real challenge to realise that knowledge doesn't always have to be acquired through a formal education but that it can be acquired through experience. Importantly, knowledge acquired through experience is equally valid! This means the knowledge my clinicians have developed through studying and working is as valid as my knowledge of my conditions, symptoms and triggers, developed through experiencing it day in day out.
I used to feel cross about 'expert patients' - I have spent all these hours in a library learning the biochemistry and pharmacology and 'Joe Bloggs' walks in and knows it all! That wasn't the right attitude, and wasn't fair on patients. As an expert patient myself now, I have come to understood that we are experts through different means, and in different fields. My clinicians remain experts in the biological aspects on disease, but that's not the full picture. I am an expert in the psychological and social impact of my conditions. All aspects need to be taken into account if I am going to have holistic integrated care - the biopsychosocial model in practice - and that's where shared-decision making comes in.

The other concept which is has been shattered since making the transition from medical student to patient is that of routine.
In my first rotation, orthopaedics and rheumatology, I lost track within the first week of how many outpatient appointments I sat in on. I didn't really think anything of them - they are just another 15 minute slot of time filled with learning in a very busy day. As a patient, my perspective couldn't be more different. I have one appointment with my consultant a year, and spend weeks planning and preparing, then a month recovering emotionally. Earlier this year I wrote a whole post just about this - The Anatomy of an Appointment. Appointments are routine for you - they are not for us!

The concept of routine applies to symptoms too. After my first relapse, I had an emergency appointment with my consultant, and presented with very blurred vision and almost total loss of movement in my hands. That very fact I had requested an urgent appointment suggest how worried I was. My consultant's response in the appointment was "there is nothing alarming about your symptoms". I fully appreciate that my symptoms may not have meant I was going to drop dead there and then, and that in comparison to his patients in ICU, I was not as serious. But losing vision and all use of one's hands at the age of 23 (or any age for that matter) is alarming in my books! I guess he was trying to reassure me, but it didn't come across like that!

I have a Chiari malformation (in addition to Postural Orthostatic Tachycardia Syndrome and Elhers-Danlos Syndrome) and have been referred to a neurosurgeon to discuss the possibility of neurosurgery. It is stating the obvious to say that for a neurosurgeon, brain surgery is routine - it's their job! For me, the prospect of even being referred to a neurosurgeon was terrifying, before I even got to the stage of discussing the operation. It is not a routine experience at all! At the moment, surgery is not needed (phew!) but the initial experience of this contact with neurosurgeons illustrates the concept of routines and how much our perspectives differ.

As someone with three quite rare and complex conditions, I am invariably met in A&E with comments like "you are so interesting!".
I remember sitting in the hospital cafeteria at lunch as a student and literally feasting on the 'fascinating' cases we had seen on upstairs on the wards that morning. "Oh you must go and see that really interesting patient with X, Y and Z!"
I am so thankful that you all find medicine so interesting - you need that passion and fascination to help you with the ongoing learning and drive to be a doctor. I found it fascinating too!
But I no longer find neurology that interesting - it is too close to home. Nothing is "interesting" if you live with it day in day out. No matter what funky things my autonomic nervous may be doing, there is nothing interesting or fascinating about temporary paralysis, headaches and the day to day grind of my symptoms.

This post was inspired by NHS Change Day (13th March 2013) - as a patient, I wanted to share these few things with medical students, what I wish I knew when I was where you are now, to help the next generation of doctors become the very best doctors they can. I regularly blog about the patient perspective and long-term health conditions, so do subscribe  to this blog, or follow me (@anyadei) for more!

I wish you all the very best for the rest of your studies, and thank you very much for reading!