A way of doctoring
Is more than healing.
It is something to do with life itself.
To help the patient
Beyond pain and disability
Towards the limits
Of full potential.

Our mind
Is a work of art
Of many facets.
Turn it this way
Just a little,
Our whole vision changes,
Down to the very depths.”

~A Way of Doctoring – Ainslie Meares~

I was anticipating my upcoming rheumatologist appointment with a mix of fear and trepidation. My General Practitioner and I had made the decision to increase my immunosuppressant dose due to a relapse of my myositis. Would I now be accused of going rogue and treating myself? Or would he listen unaccusingly and help me navigate a plan for the future?

He may have thought I was demonstrating a distinct lack of need for his expert opinion. Instead, I was merely attempting to navigate my lived experience of my disease with his unfilled expectations for eventual resolution of my disease process.

For I had not got better…it didn’t matter if my not getting better made sense. It was the truth, and arguing that it made no sense wasn’t going to magically make me better. I needed a plan — not just hopeful thoughts.

But as I contemplated my possible arguments and his potential counterarguments against them, I felt increasingly overwhelmed. I was now well, and my brain could actually function, but vigorous debate had never been one of my strong points.

And my desire for my doctors to like me didn’t help matters. I already felt like everyone who saw me sighed inwardly. One even rolled his eyes outwardly as he told me my symptoms made no sense. He had never seen a septic patient like me. He added that he didn’t want to see me again as he had no idea how to treat me. At least he also qualified this by saying that I was a nice person, just a difficult patient. Walking the line between being so nice a patient that no one takes you seriously, and not being so difficult a patient that no one wants to see you at all was such a delicate balance.

And, it was an unfair balance in many ways, as despite my 30-year medical career, along with my 18 months of lived experience with my two rare diseases, I often felt completely helpless when faced with my specialist’s adamant opinions and my own struggle to adequately express how I felt and my own thoughts about my treatment.

I had recently read an article on Medscape about doctors failing to be “good” patients, but even then, I struggled to see myself in the doctors telling their stories. Some doctors wanted to be involved in the entire decision-making process, while others had faith in their specialists to guide them in the right direction.

For most of my illness, I had no cognitive ability to be involved in a decision-making process. I could barely keep myself upright, and fatigue and nausea ravaged my brain. I did what I was told and never questioned the plan, except to voice my frustration at how long it was taking me to recover.

But eventually I managed to wrangle the multiple wild cats that ran havoc around my brain and corralled them in one place long enough to make a decision. Twelve months of medical treatment were long enough. The risks of surgery for my Sub-acute Invasive Aspergillosis were worth it. It was the only option that gave me some small hope of eventual recovery.

But those months of long imprisonment of my scattered brain being held hostage to my slowly failing body eventually took their toll. I began to lose trust that my specialists truly saw me. They were seeing only what they wished to see and labelled me accordingly….depressed…difficult…not coping…

And through it all, I was being slowly crushed by the inertia of being stuck under a raging torrent with no way to extricate myself and no one to help to get out. My only choice was to continue to hold on to life as best I could until someone eventually recognised the dire predicament I was in.

After messaging my rheumatologist about the recurrence of my weakness, his last words to me rang constantly in my ears. “He couldn’t just take my word for my weakness.” In fact, it was no different to the past 12 months. No one was willing to take my word for any of my symptoms. But what other options were there?

I had been so certain of his understanding and trust. At one level, I understood his frustration. I excused him with the extenuating circumstances of being unwell or tired, overworked or just overwhelmed by my ongoing flouting of “proper” patient-doctor relationships.

I told him too much, and probably expected way too much, but I was so unwell it was the only way I could see to cope. What was the use of seeing a counsellor (or a psychiatrist) when, in fact, my PTSD was due to the constant ignoring of my ill health? I didn’t need someone to tell me I would be OK. What I needed was for someone to address why I was still feeling unwell.

The trauma of his statement continued to haunt me. Was he going to insist on continuing to reduce my medications at my next appointment? If so, it would be like being given a death sentence. I would now be consigned to live life like an invalid…muscle strength continuing to worsen unabated, refused the best Western medicine had to offer…all because he did not believe that I could possibly still be unwell.

My reply to my rheumatologist was honest and straightforward. I did not play games. I was not being emotionally manipulative. I was scared and confused. I was physically and emotionally battered. I told him I would see my General Practitioner and get her to contact him. I did feel bad for my GP. It seemed almost impossible to summarise months of fluctuating symptoms into a single concise letter.

Stressed…but trying not to stress. My only comfort was that I knew I was now on the proper medications for treating my myositis. There was nothing else that I could do right now. But what was my rheumatologist going to think?

And so I waited to see what sort of reception I would get when I was finally sitting face to face with him. Will he tell me directly that I was out of line? Will he be annoyed…angry…frustrated…or just exasperated because surely I should be better by now. For the first time, I wished I could take my husband along to help argue my case. But after his own multiple medical issues, he has no sick leave left. I would have to do my best to fight my own battle.

Externally, I look very stoic. I am calm and try to be rational. But I can also look melodramatic and passionate. The combination of stoicism and melodrama tends to make me appear physically well…my eyes flash and I fight back vigorously…when in fact I should try to look how I actually feel…like death warmed up.

But I am a doctor…and so it is assumed that I should be confident and rational…and if I am not, it is because I am anxious and depressed. Surely I wouldn’t be willing to appear so emotionally unstable if I were not depressed? Surely being unwell should just make me look sick. And I did not look sick. Around and around I went….stuck and with no way out.

In the end, the only way out was to go through everything with my GP and make up my own mind. Everyone was telling me that I didn’t make sense and that they had never seen a patient like me before. I was the only person who knew me…though I  saw my GP every two weeks to give me rational guidance to help me navigate my rare combination of illnesses.

And then at last a small glimpse of hope. At the Myositis Discovery Meeting in Brisbane in late August, I tried to further delineate some of the possibilities available to me to treat my disease. My submitted questions about repeating my loading dose of IVIGs and my query about my rheumatologist’s seeming obsession with wanting to decrease my medications got answered with two different points of view, and a facet of my treatment that I had never before considered suddenly came to light.

The rheumatologist began by stating that she just couldn’t take her patients’ word for their weakness. She will only make the decision on clinical examination. So, this is a common mantra among rheumatologists, apparently. I now saw why my rheumatologist had said what he did. She then followed this up by saying that most of her patients can get off IVIGs completely. They are high-risk medications that can result in clots. Almost all her patients are controlled on oral immunosuppressants alone.

I look at her wide-eyed…the neurologist must have noticed my shock and the rheumatologists black-and-white treatment of my question. I countered with the fact that I now struggle to walk around the house, whereas three months ago I could walk over one kilometre.

The neurologist’s input gave further nuance. She countered with the fact that there are a small group of patients, especially those with Necrotising Myositis, who need high-dose IVIG for a long time. I breathed a sigh of relief. Here was someone who had at least seen someone like me before! There was no glazed look of confusion and doubt.

But there was more to come. As soon as question time was finished, she came directly over to talk to me. I would never have had the courage (or the muscle strength) to approach her. She immediately told me that I am being under-treated. She told me that there was a way to get a double dose of IVIGs…80 grams through Blood Star and 80 grams through the hospital. When I told her about my Subacute Invasive Aspergillosis infection, she said that for me, increasing my IVIGs was far preferable to increasing my immunosuppressants. She was happy to be contacted by my rheumatologist about how to do it.

Despite the fact I could barely lift my feet off the floor it felt like I was floating. I thanked her for validating my symptoms and for sharing her wisdom from her long years of experience. Now that I knew what was even possible, I knew what treatment I could fight for. I now had some hope…but most important…I was seen!

Will the sun come out after my upcoming appointment…or will I be thrust once again into the dark? Slowly, I turn and look at myself through others’ eyes. I am composed of many facets, hoping that I can be seen for who I truly am. I am not just a disease. I am not just a patient. I am waiting and hoping to be seen and heard…working slowly towards some semblance of health.

We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. 2 Corinthians 1:8-9