When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other people’s gardens
And learn to spit.

~Warning – Jenny Joseph ~

My rheumatologist looked at me with a glazed expression, obviously puzzled by my ongoing episodes of my hip joints refusing to move against gravity. My fluctuating weakness pre-immunoglobulins made little sense to him. There was nothing I could say in return. Systemically very unwell with Sub-acute Invasive Aspergillosis, all I could manage was a description of my symptoms. Surely it was up to him to figure it out?

Sometimes my doctors would argue with me, trying to reassure me that since I looked well, surely I must be well. Other times, they would sigh. One even rolled his eyes and said he had never seen a septic patient like me before. Another tried to get me to see a psychiatrist as I looked very anxious.

Most of the time, they would simply look at me blankly, apparently disbelieving my feeble attempts to tell my complex and convoluted story, all while feeling so unwell that both my brain and body were barely functional.

My problem was that I could too easily see myself through their eyes…I was familiar with the frustration and annoyance that patients’ stories that didn’t fit the usual narrative caused. I wasn’t being difficult on purpose. Being difficult was being forced upon me as the weeks dragged slowly by.

What I found particularly trying was not having my story believed. When my rheumatologist told me he couldn’t just take my word for my symptoms, I wrote back crankily, asking why I was seen as such an unreliable historian.

Seeing the patient as an unreliable historian goes back centuries… even embedded in the pages of literature, where a first-person narrative is seen as suspect, the facts being “twisted” for the protagonist’s gain… or just the narrator having no insight into what they were actually like.

Instead of me being an unreliable historian, I felt that my doctors were often poor listeners — or more accurately, time-poor listeners. They would hurriedly read my patient notes, scattered with errors in terms of timeline and symptoms, and then rapidly jump to what appeared to them to be obvious conclusions. If I tried to correct them, they concluded that my memory of events, rather than the written record, was wrong.

I would then try to counter this by apologetically but shamelessly ignoring the typical doctor-patient boundaries and be willing to eloquently share my fear and show my vulnerability in this new and challenging situation of navigating being a patient.

I would text them questions they could not answer, arguments as to why I was unwell, and treatment and diagnostic options that seemed rational….to me anyway. I’m sure they mostly sighed and rolled their eyes.

At one point, I was accused of treating myself. I looked my respiratory specialist in the eye and told him I had no choice. Everyone kept telling me that there was nothing wrong with me. And I hadn’t just treated myself. I saw my General Practitioner every two to three weeks and went over everything with her dispassionate and logical input.

Ironically, as an Emergency doctor, I typically just do what I am told. My natural personality is to be obedient and a rule follower. I receive expert advice for my sick patients and rarely question it, unless I believe that what is suggested isn’t in my patient’s best interests. Only then do I push back.

My frustration with not being listened to eventually led to behaviours that helped me further refine my newly learned skill set: being difficult. Only I could decide which potential risks would be worth the possible benefits of each treatment option. I saw a cardio-thoracic surgeon and made the decision to have my Aspergillus lung abscess surgically removed. I was well aware that the infection could spread, but it was worth the risk.

When my myositis relapsed pre-surgery, I texted my rheumatologist to get his thoughts about what the next possible plan might be. The reply I got shocked me. In a few brief lines, he stated that he couldn’t just take my word for my symptoms, and he wanted to keep reducing my immunosuppressant medications. My recurrence of weakness could not possibly be due to my myositis. I now felt helpless…and trapped.

I tend not to be a fighter or a debater. So I waited for ten weeks. I then decided that I was not going to miraculously improve despite the positive thoughts of my rheumatologist. After discussing it with my General Practitioner, we decided it might be easier to ask for forgiveness rather than obtain permission. After getting the go-ahead from my infectious diseases specialist, I increased my dose of immunosuppressant to what I had been on four months before. I was aware that the effect of this dose increase would take many months to make a difference to my myositis symptoms.

Two weeks and a third dose of IV immunoglobulins later, my worsening weakness and ongoing severe muscular pain resulted in our decision to restart high-dose prednisone. I had been very reluctant to do this as the side effects were so annoying and the weaning of it so protracted.

My hope was not only for relief of my muscular pain, but also that the IV immunoglobulins would work for more than a few days the following month. Much to my surprise, I experienced almost immediate improvement in my weakness, although it lasted less than a week. Unfortunately, it made no difference to my post-infusion muscle strength. Once again I had only a few days of being able to move against gravity. I did however have rapid relief of my pain. Within 48 hours it had mostly settled and my sleep on high dose prednisone was far better than my ability to sleep without it. Pain was far more detrimental my ability to sleep than mania!

Being difficult does make me feel anxious, as I have to squash my people-pleasing tendencies in my fight to be heard and believed. However, being difficult has also been a growth experience, as I realise I am the only person who truly understands how I am feeling.

I try to have insight into my behaviours, knowing I might be overstepping traditional boundaries. My natural aversion to fuss and attention means that I am probably as negatively affected by this as my long-suffering doctors. So I fight to be seen and heard, but I try to do it with kindness and humour.

I expected empathy and validation from my doctors, but everything about me was too hard for them. It was far easier to try to fob me off onto another specialist to sort out…maybe a psychiatrist…

They probably thought they had to push back because I was too depressed to realise that there was nothing seriously wrong with me…which is ironic!! I was so unwell they couldn’t see that there was something really wrong because surely I couldn’t possibly be as unwell as I thought I was!

At a recent appointment with my General Practitioner, I asked her if I was difficult. She laughed…a laughter that mixed with my laughter as, at each appointment, I debriefed my medical trauma and she listened, empathised, and helped me to make a plan for the future. And so I will doggedly continue to practice the art of being difficult.

But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

~Warning – Jenny Joseph ~

Recommended Reading: Changing How We Think About Difficult Patients – Joan Naidorf