Does my sassiness upset you?
Why are you beset with gloom?
’Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

~Still I Rise – Maya Angelou~

My respiratory physician was subdued. There were no smiles and no stories. I had known he would not be particularly happy to see me, even though I had good news for him. Since my lung surgery at the the end of June I had felt very well. I had taken his advice to get an opinion from a cardio-thoracic surgeon on possible surgical management of my Aspergillus lung abscess, and had had an excellent result. But there was more than a year of history behind us, much of which I had spent failing to convince him that I was unwell.

When he asked why I was there, I informed him that my rheumatologist had instructed me to have yearly lung function tests so he could blame him! My myositis-associated marker, Ro-52, was also linked to interstitial lung disease. My lung function tests were all normal, and he went through my recent chest CT, reassuring me that there were no concerning signs of infection or interstitial lung disease. But when I told him how my infectious diseases specialist was continuing to treat me, he started to question my management. He had never seen anyone on post-op long-term antifungals and having monthly Aspergillus Antigen levels before.

But he had also never seen anyone with Subacute Invasive Aspergillosis before either. His previous experience had been either with Chronic Aspergilosis, which rarely made the patient systematically unwell, or with Invasive Aspergillosis, where the patient was so ill that they were in the ICU. I was in the middle of these two extremes…a partially functioning immune system, meaning I neither became so incredibly unwell that my diagnosis was obvious, nor was I so unwell that I was critically ill.

I could feel his doubts and, in turn, his accusations. He thought I was pushing my Infectious Diseases specialist to over-treat me due to fear of becoming unwell again. I told him the decision was made by my specialist. I was still immunosuppressed, and my Infectious Diseases specialist knew I had a high risk of relapsing due to my invasive disease. He wanted to do everything possible to cure me…or at least prevent a relapse. I admit I was relieved at his management choices, but I had not asked him to do it.

My respiratory physician then muttered something about me talking to some professor he had never heard of. At first, I was confused. He knew about my Infectious Diseases professor. Then I realised he was talking about the neurology professor who had recently travelled around Australia, holding information sessions on myositis and sharing the latest treatment and research. I was fortunate to talk to her when she was in Brisbane. I replied that she had been incredibly helpful, and my myositis was much better after a repeat induction dose of IVIGs. He had obviously been talking to my rheumatologist, who seemed to think that I was forcing him to over-treat me…and they had all made the assumption that I was also telling my Infectious Diseases physician what to do.

My Infectious Diseases specialist was the one doctor (apart from my General Practitioner) who always believed me. At my first appointment, he had listened to my story and was definite in his response. I was immunosuppressed, and therefore I needed to be treated as Invasive Aspergillosis. I breathed a sigh of relief.  At this point, I had had more than six months of being told that there was nothing wrong with my lungs. Finally, someone believed my story.

But my other specialists’ doubts about the validity of my story continued to haunt me. I was already labelled as depressed…anxious…difficult. My expectations for getting better were irrational. I just had to accept how things were. The problem was that whenever I was pushed into a corner and forced to make my own treatment decisions in consultation with my General Practitioner, I usually got better. But despite this, I still got disbelieving looks. It was as if they thought everything worked purely from a placebo effect.

My specialists seemed stuck in the myth of the classic presentation of my diseases. In actual fact, this is far less common than atypical presentations! As a doctor, I am often surprised when even a simple disease such as appendicitis presents like the textbooks say it should. There is a wide variety of signs and symptoms.

My myositis caused diffuse muscle pain, proximal muscle weakness, and mild fatigue. My lung abscess resulted in an ongoing productive cough, constant right-sided pleuritic chest pain, and fatigue so debilitating that I struggled to sit in a chair. The symptoms of my lung abscess were all blamed on my myositis. As my respiratory physician facetiously said, “Of course you feel like crap. You have a crap disease.” I would reply that my muscles were fine… it was my lungs that were making me unwell. But I looked well and had normal bloods. Everyone thought I was being melodramatic.

My two diseases and their little-known medications interacted in weird and wonderful ways. Because of my immunosuppressants, my body couldn’t mount a proper immune response, so my blood tests remained stubbornly normal. Despite my ongoing sweats and chills, I never had a fever. My immunoglobulins would give me a broad boost of IgGs, drawn from thousands of people and active against a wide range of pathogens. My symptoms would then decrease for a few days. These would then slowly wear off over the next couple of weeks, resulting in me becoming unwell once again.

Lawrence Reed wrote in Medicine in Denial that “The dilemma is that known patterns are rough generalisations about large populations, and as such are usually an imperfect fit with unique individuals. Every individual is a unique combination of myriad similarities to and differences from other individuals. What constitutes a similarity or difference depends on the particular diagnostic or therapeutic context.” In actual fact, both my diseases were so rare that a classical presentation didn’t even exist. Every patient was different.

The only way to get around this myriad of possible presentations is to listen to the patient. If given the opportunity to tell their story, they will provide enough clues for the clinician to distinguish among the possible diagnostic options. It is a common mantra in Emergency Medicine that if a patient presents two or three times in a short period, it is essential to sit down and go through the entire story from the beginning, looking for clues that may have been missed. Patients never present multiple times for their own entertainment. They do it because they are still unwell.

If a patient already has a known disease process, they likely know more about how their disease affects them than the doctor does. Learned knowledge is vital for making a diagnosis and keeping up to date with the latest treatments. However, without listening to the patient’s lived experience with their disease, true healing will never occur. Being heard is just as important as up-to-date treatment because if the clinician doesn’t take the time to listen, they may not select the correct treatment or even make the right diagnosis.

Lived experience is essential in all our relationships, not just with our doctors. It is realising that others may have struggles that we do not. We can support each other by listening to their experiences and sympathising with them. Curiosity about others results in empathy. Empathy empowers, whereas sympathy can be dis-empowering. No matter who you are or what you do, let’s all listen to one another and empower one another.

“Empathy fuels connection. Sympathy drives disconnection.”

~Dr. Brené Brown~

Further reading:

Heard, Helped, Healed – Terry Hannan

Medicine in Denial – Lawrence Reed