This is the first part 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.
“You’re young. It’s just a cold. You just need to rest for a few days,” said the doctor as he sent me home from A and E, where I had presented with shortness of breath, lethargy, night sweats and a dry cough.
Only weeks later, I found myself in intensive care on high-flow oxygen, wires connected everywhere, being fed through an NG tube, and battling pneumocystis pneumonia and cytomegalovirus. Clearly it had not been just a cold…
This occasion was by no means an isolated incident. Countless times I have been dismissed by doctors and told there is essentially nothing wrong with me, both during the time it took for me to get a diagnosis and during my subsequent treatment.[/two-third]
I have a rare auto-inflammatory condition called neutrophilic panniculitis. Alongside extreme weight loss, tiredness and low-grade fevers, my condition caused painful lumps to form underneath my skin and in the deep fatty tissue, which in 2012 had left me completely disabled and housebound.
It took ten months to find out what was causing my symptoms, during which time I was passed from doctor to doctor, subject to extensive disbelief, and given many wrong diagnoses, until I was eventually diagnosed by biopsy.
My condition is kept mostly under control through a combination of immunosuppressant medications and steroids. As a consequence, however, I can on occasion develop severe infections. Over the four years I have been immunosuppressed, I have been hospitalized with urinary sepsis, disseminated shingles, haemorrhagic cystitis, Influenza A and pneumonia, to name just a few.
I have come to know my body well and am aware of the signs that I am developing an infection. Immunosuppressed patients do not always present with typical signs of infection like temperatures. For me, night sweats, shivers, general malaise (like really bad flu), nausea, sometimes vomiting, and sleeping a lot usually means something is brewing.
Yet still I come up against doctors who are unwilling to listen to my own assessment that I am acutely unwell. I am yet to understand whether this is because I appear young and healthy, or because some doctors are simply unwilling to accept the role-reversal that transpires in a consultation when the patient knows more about their condition than the doctor.
Either way, dismissing and discrediting a patient’s knowledge like this can be hugely detrimental to patient care. It can also lead patients to avoid seeking treatment because they feel they will not be listened to.
The occasion described in the opening to this blog resulted in a three-month hospital admission. In contrast, my shortest hospital stays have been when doctors are receptive to my own knowledge.
Though I understand patients cannot dictate their own care, there comes a time when an expert patient does know their body better than the doctor. It is a far better doctor who trusts this, rather than assuming a patient is exaggerating.
Perhaps the most important realization for me has been that actually I do know my body, and as such I have become my own advocate. I now seek help sooner when I am unwell and I believe this ultimately has resulted in better clinical outcomes and shorter hospital stays.
I do not seek to criticize doctors (in fact I hope to one day become one as I am currently at medical school!) but instead to emphasise just how important it is to listen to the patient in front of you, and see beyond their age or appearance.
As a female in their twenties sat in the A and E waiting room, I may look young and healthy, but no one knows that for the past few weeks I have become more and more lethargic until I am barely awake a few hours each day. No one knows that I vomited multiple times before I left the house. No one knows that I nearly didn’t come today because I felt too poorly to sit around waiting to be seen.
Believe me, I avoid hospitals at all costs, so if I have turned up at A and E, the chances are I am really sick. Yet sometimes it feels as though doctors have made a judgement about me before I have even opened my mouth; that they are ready to send me home before even hearing what is wrong. This is why a patient’s medical history is so crucial.
As much as I might wish I was an ordinary 25 year old girl, with no reason to see the inside of a hospital except in my role as a medical student, unfortunately I have a complicated medical history. I have a condition most doctors have never heard of. And I take medication that means I sometimes get sick.
But I am also an educated, well-informed individual who can give doctors the information they need; not because I am a medical student but because I live with this condition and treatment daily. Although I did not choose to be, I have become an expert patient.
In medical school it is drummed into us how important it is to listen. The famous quote by Sir William Osler tells us to “listen to your patient, he is telling you the diagnosis.” But we also all know the frequently cited fact that doctors interrupt their patients on average after 18 seconds… I certainly couldn’t explain my medical history in 18 seconds.
The key to a good doctor is not just hearing what a patient is saying, but actually listening. It is important for us to remember that even with all the fancy tests and high-tech diagnostic machinery now accessible to doctors, the patient’s story will always remain fundamental to the practice of medicine.