‘The challenges of being a ‘good’ patient’ is the fifth part of Jessica Grace’s ‘Medicine beyond the textbook’ blog series. The blog posts, released every two months, share Jessica’s stories and thoughts as both a medical student and rare disease patient.

I am ‘that’ patient. The repeat offender; the one with the condition you have never heard of and a medical history longer than your arm. Accompanying me to my appointments are two hefty files brimming with notes you’d probably rather not read. I am able to understand and use medical lingo. I’ve read all the journal articles about my condition (there aren’t many!) and I know about the latest treatments.

Yet in the past, I have tried to conform to the ideals of a ‘good’ patient. I have not voiced questions and concerns so as not to be perceived as challenging the doctor’s authority. Patients, rightly so, do not want to be saddled with labels such as ‘difficult’ or ‘non-compliant,’ which could lead to future dismissal of their symptoms. But should patients have to resort to deference to their doctor in order to be perceived as ‘good?’

Of course, some patients genuinely are difficult. There are those who are rude, disrespectful or abusive towards staff, and they, of course, should be confronted for their behaviour. But what about the patient who challenges a doctor’s dismissal of their symptoms? What about the patient who is simply well-versed in their own healthcare?

For me, there have been many cases when it has been in my best interests to not be ‘compliant.’ If I had not continued to insist that something was very wrong when I first became unwell, I never would have got a diagnosis. I would have accepted what the first doctor told me – that I just had muscle spasms, rather than a rare auto-inflammatory condition. The simple truth is, that on occasion, I have had to advocate for myself in order to receive the healthcare that I need.

I have learnt the hard way that sometimes I do have to be assertive, because when doctors have dismissed symptoms that I knew were not right, I have suffered as a consequence. At the end of the day, I am the patient and I know my own body.

The reality is that my plight cannot be accurately captured by the opinion a doctor holds of me as I sit in front of them for all of a few minutes. I do not stop being a patient the minute I walk out of their office. I live with this condition day in, day out, and have been doing so for the past 5 years. My symptoms follow me home, where I have to cope with them alongside my education, my work, my attempts to have a social life.

You see, I never chose to be a ‘difficult’ patient. Just as I did not choose to have a health condition; not least a rare one that few doctors have heard of. I would much rather keep quiet and be viewed as a ‘good’ patient, but my ability to live my life depends on the treatment I am given. Standing up for myself has therefore been born out of necessity. But should I have to choose between being a ‘difficult’ patient or continuing to suffer?

Similarly, when I ask about an experimental treatment or drug, am I being ‘demanding’ or someone who ‘knows too much,’ or does it merely illustrate how desperate I am to find a treatment that could enhance my quality of life? Is it not understandable that I would want to know if there was any treatment that might give me my life back?

It is only natural that patients who are greatly affected by symptoms or whose conditions are poorly controlled want to educate themselves. If you have a simple condition with an effective go-to treatment, there would be no need to find out everything about your condition. But for those with rarer diseases without standard treatments, it is understandable that they seek answers from others with the same condition or from the Internet. They want to stumble upon the treatment that could make their life better.

But is empowering yourself so that you can ask the right questions of your doctor not a reasonable response to having a condition that affects all aspects of your life? Why then should those who ‘know too much’ be considered ‘challenging?’ Would it not be more unusual for a patient to be completely resigned to the fact that they must suffer?

Being a ‘good’ patient should not equate to being meek and accepting of everything a doctor says, just as blindly following a doctors advice is not always in a patients best interests because doctors are not infallible.

Fundamentally, being assertive is not the same as being ‘difficult.’ In this day and age, there is no place for doctors who are domineering and paternalistic, nor those who do not like it when a patient disagrees or ask questions. Doctors should also remember that patients who they perceive as ‘difficult’ are not trying to make their job harder. They are going through some of the most challenging times they will ever face and they just want to be okay.

A patient being knowledgeable about their condition is not necessarily a bad thing. In fact, it can be a real positive, allowing for better disease management and a more collaborative approach to the doctor-patient relationship. Not only does this allow patients to bring their own personal experience of their illness to the table, but patients who are actively involved in their treatment plan typically have better outcomes.

As for me, I do not ask that my doctor knows everything, nor do I expect them to agree with everything I say. All I ask is that they hear me when I speak, that they respect my scientific knowledge, and that they are willing to inform rather than dictate treatments.