The Systems Thinking of Patient Work

Glitched self-portrait of Alex, taken from multiple angles. Segments of the photo are rendered in bright, distorted colours, or overlaid with horizontal lines. Rectangular segments of the image are filled with multi-coloured noise.

I spent yesterday afternoon and evening in urgent care because I’d been dealing with intractable craniofacial pain that had gotten so bad it had triggered a migraine and was making it difficult to move at all.

Why am I sharing this?

Because I think the strategies I used to access the care I needed (and the fact I needed to use them) are illustrative of the incredible systems thinking skills that chronic patients develop, the service and system design failures that force that skill development, and the leadership role that chronic patients should be playing in healthcare transformation organizations.

Part 1: The Pathological Gaze Is Bad and You Should Feel Bad

Part of the reason it is so difficult for patients with invisibilized illnesses to access diagnosis and care is that modern clinical medicine relies heavily on the pathological gaze, or “knowing through looking.” A disease is “organic” if we can find (and are willing to identify) a tangible pathology using a biopsy, a scan, a blood teset or a genetic sequence. When we can’t, it is labeled “functional” — and over the past 100 or so years, “functional” has come to be a synonym for “psychosomatic.” (Thanks Freud!)

Clinicians also acknowledge, albeit indirectly, the inefficiency of this approach: when discussing poorly understood illnesses such as myalgic encephalomyelitis and long Covid, they point to other conditions such as multiple sclerosis and lupus which, until relatively recently were not legible to the clinical gaze and were therefore poorly understood. Their solution to the ongoing problem of clinically invisible illnesses is to advocate for more research, to make these illnesses legible by finding the pathological signs by which clinicians can recognize them. They argue that we solved earlier medical mysteries by “following the science” and suggest that our response to contemporary medical mysteries is anomalous. But these arguments oversimplify the histories to which they refer.

They neglect the fact that, until the pathological signs of diseases like multiple sclerosis were identified, people did indeed receive functional and psychosomatic diagnoses, like neurasthenia and conversion disorder. They neglect that people with these conditions continued to receive psychosomatic diagnoses well after their pathological signs were identified and diagnostic criteria were standardized. They neglect that presence of a pathological sign does not guarantee clinical recognition-that still depends on whether a clinician orders the right test, how a technician performs and interprets it, and what conclusions the clinician draws from the technician’s interpretation. It also depends on luck, because false negatives can happen.

Finally, they neglect that healthcare is a capitalist enterprise, whether it operates in a free market system or is administered by a capitalist state, and that the process of getting from pathophysiological hypothesis to clinical costs an immense amount of time and money. This has a couple of major consequences. First, pathophysiological research tends to be conservative; the hypotheses that get funded and therefore explored are those that build upon established knowledge. This leaves little room for radical innovation of models and methods. Second, it disincentivizes research into the pathophysiologies of hard-to-visualize illnesses. When an illness requires entirely new methods and new technologies in order to find its pathological signs, it’s much more cost-effective just to call it biopsychosocial and then quietly bracket the “bio” part and suggest patients focus on diet and lifestyle and changing their thought patterns.

Except that in the long-term it isn’t. Setting aside the injustice and harm done by primarily psychosocial responses to somatic illnesses (which, to be clear, is a BIG thing to set aside), it’s an economically disastrous approach in the long-term. Consider, for example, the Great Resignation of early 2021. Most coverage emphasized shifting priorities as a primary driver of voluntary resignations among the labour force. What was not widely acknowledged was the fact that record numbers of people were reporting an inability to work due to illness.

Figures released in May 2022 by the United Kingdom’s Office of National Statistics and the Bank of England indicate that the number of people unable to work due to long-term illness had increased by one-fifth since the start of the pandemic, and is the highest it has been in the past thirty years. In Canada, the number of people who reported they were not looking for work due to illness during the second quarter of 2022 was 31 percent higher than it had been during the last quarter of 2019. This was second only to the record high that occurred during quarter 2 of 2020. In August 2022, a report from the Brookings Institution estimated that 3 million workers in the United States-1.8 percent of the country’s workforce-were unable to work due to long Covid.

Part 2: Patient Gaze, or Diagnosing Without Looking

Most chronically ill people are not clinicians, and we do not have access to the highly regulated and gatekept tools that scaffold clinical diagnosis. We cannot order their own CT scans or perform their own blood tests. Instead, we use literature reviews, systems thinking and inductive reasoning to work through a self-diagnostic process that generally involves 5 steps:

Diagram showing a five-step process beginning with embodied experiences. These are triangulated through literature reviews, poetry, crowdsourcing, anatomical mapping, “invalid mindfulness” and diaries, to arrive at a symptom vocabulary. Next, patient engage in an iterative cycle of targeted research and pattern recognition During this stage they identify possible physiological components and partial mechanisms from established knowledge about relevant symptoms, tissues and body systems, and identify overlapping components, systems and mechanisms for multiple symptoms. From there, they develop an etiological model and finally identify possible treatments.

1. Embodied Experiences
2. Symptom Vocabulary
3. Targeted Research & Pattern Recognition
4. Etiological Model
5. Possible Treatments

In the case of my pain yesterday, that process looked like this:

1. Embodied Experiences

• This is different from my usual migraine symptoms (less light sensitivity, more motion sensitivity, more localized head pain)
• This is not responding to any of my rescue meds or self-management treatments
• The pain is radiating along a specific path starting in my neck
• I can trace the path by pressing on my scalp and feeling where it is tender

2. Symptom Vocabulary

Based on the tenderness, the radiating nature, the fact it won’t respond to heat treatment, gentle relocation of my shoulder, ribs and cervical vertebrae,* muscle relaxants or triptans, this is nerve pain.

*I have a connective tissue disorder and this is part of my usual self-management protocol.

3 & 4. Targeted Research, Pattern Recognition & Etiological Model

Based on the fact that my shoulder was out, I probably have a nerve that is flipping out due to being compressed either by the joint itself, or by the muscles that seized up in response.

Having traced the path of the pain, and compared it with anatomical diagrams, I’m pretty sure the issue is within one of the occipital nerves, most likely the greater occipital nerve. That would make this occipital neuralgia.

5. Possible Treatment

Based on what I already know about nerve pain as a result of my experience as a chronic patient, I suspected a nerve block might be in order. Armed with the clinical language of “occipital neuralgia” I checked out possible treatments and sure enough, the first line treatment most commonly mentioned is a combination nerve block-steroid injection.

Part 3: Strategic Communication, or Actually Getting the Care I Needed

Arriving at a plausible etiology and possible treatment is barely half the battle. Chronic patients have to be extremely tactful about how we communicate the insights we generate through this process. We need to balance being specific enough to effectively communicate what is happening and what we need, with being vague enough that we won’t be dismissed as having “spent too much time with Dr. Google.” (Never mind that Drs. Twitter, Wikipedia, Google Scholar and I are 6-nil going head-to-head with the Ontario healthcare system on actually diagnosing the chronic illnesses I have been dealing with since the age of 4 and identifying effective treatments for them.)

Seeking emergency treatment for chronic pain, especially if you are a marginalized patient, is especially risky because there is a strong chance that you will be labeled as “just” drug-seeking, attention-seeking, or both. (Never mind that if someone has substance use or psychiatric disorder that’s causing them excruciating pain…that is still an urgent medical issue that deserves urgent and compassionate care.)

The scripts I used yesterday were:

“I think I have a pinched nerve, this is something that’s happened to me before, and I’m hoping I can get a nerve block or whatever you’d recommend.”

“I have a connective tissue disorder so when things slip out of place or muscles seize up, they can end up pinching nerves. It’s happened a few times in my neck and this feels the same way as last time.”

“It started last Thursday, it’s gotten a bit better and worse at times but it’s never fully gone away. I’ve tried my muscle relaxants and triptans, as well as heat treatment and topicals and some of them have taken the edge off for a few hours but they’ve not been very effective.”

“It started out as pain radiating from the back of my neck and around the side of my scalp to just behind my eye. After a while I started getting more typical migraine symptoms and the triptan helped with those but not with the original pain.”

The reasons for choosing these scripts were as follows:

• Try not to be appear too confident about my self-assessment
• Emphasize that this is an ongoing problem (without mentioning that it’s not as yet a formally diagnosed problem)
• Emphasize my relevant diagnosed medical history
• Be as specific about the site and quality of the pain as I could be
• Be specific about duration and about what it had not been responsive to
• Specifically mention the treatment I was pretty sure would help while taking care to say that I was open to other options

These scripts are by no means foolproof; they still depend on the mood and prejudices of the on-call staff, which may in turn be affected by whatever else is going on in the clinic that day. I consider myself lucky that my local hospital system has a somewhat unusual arrangement, where one of the hospitals houses an urgent care clinic. Unlike most walk-in clinics, they are equipped to do more advanced tests and procedures (such as a nerve block), which allows me to avoid the ER where going in for chronic pain gets you compared to the person having the massive heart attack and puts you at greater risk of being judged for taking up resources you don’t technically need or deserve (after all, you’re not going to die from that migraine, even if that dying might actually feel preferable).

While recognizing that chronic patients shouldn’t have to play 4d chess in order to access the care they need to participate in their own lives, it is also worth recognizing that the fact that we have to do this makes us experts in communication and information design.

The Moral of the Story

Healthcare systems all over the globe are in crisis. This is unquestionably due to deliberate, systemic neglect from governments motivated by profit. As any chronic patient can tell you, it is also due to the fact that healthcare systems have NEVER been equipped to diagnose and treat us. We have always been a “bad investment” for healthcare, whether we get framed as an unacceptable risk by private insurers, or as unacceptable drains on the public wallet.

Here are just a couple of examples that I come back to whenever I’m in a POTS flare.

(Get it? They raise my blood pressure, is what I’m saying.)

A poster from Choosing Wisely Canada’s “More Is Not Always Better” campaign. Posters from this series hang in doctors’ offices across the country, so that chronically ill patients seeking care can be reminded that they’re causing harm by doing so. This poster shows an image of a grotesquely overstuffed leather suitcase, with straps strained almost to breaking and clothing items spilling out. Beneath the campaign slogan there is smallerr text that says, “The same is true for medical tests and treatments. Talk with your health care provider about what you need, and what you don’t. To learn more, visit www.choosingwiselycanada.org

Screenshot from a Guardian article from September 17, 2017. It is written by Sarah Boseley, Health Editor, and has the category heading “Anxiety.” The headline says, “Tackling health anxiety could save NHS over £400m a year, study finds.” The subtitle says, “Researchers find people who have had a serious illness fear it will happen again and symptoms persist when nothing is wrong.” An image of a person’s extended index finger poised over a laptop keyboard has the caption, “People with health anxiety believe the worst possible scenarios they read online and repeatedly return for tests.” The article’s nut graf says, “The NHS could save more than £420m a year by offering treatment for health anxiety and “cyberchondria,” a psychological ailment caused by people obsessively looking up their symptoms online, a study has estimated.”

Healthcare systems are in desperate need of change. Meanwhile, chronic patients want nothing more than to apply the insights that we have gained through years of suffering and fighting, so that no one else has to go through the same thing. I believe that handing us the reins is exactly the change that is needed.