The Power and Peril of a Diagnosis

What's in a name?

Have you ever struggled with an unexplainable symptom? I had a patient a few years back that had excruciating belly pain any time he ate, for nearly a year. He had lost 35 pounds he didn’t have to spare. He had seen his doctor and a specialist, but no one knew what was going on. I was suspicious he had a blockage in the arteries in his abdomen and ordered a special type of CT scan to check for that. It turned out I was right! The treatment he received truly changed his life. It felt really good to solve such a big problem for someone. In that way, finding the diagnosis has a lot of power. In many situations, helping a person find the diagnosis, also helps them find the cure. However, there are so many conditions where we are “managing” symptoms rather than curing them. In those cases, I wonder how much our current approach to diagnosis is serving us. 

When people are struggling with physical or emotional symptoms that they or those around them don’t understand, receiving a diagnosis can feel like a life-line. It gives them the ability to understand and describe “why they are the way they are”. As Gabor Mate puts it in The Myth of Normal: 

Diagnoses are abstractions or summaries: sometimes helpful, always incomplete. They are professional shorthand for describing constellations of symptoms a person may report or of other people’s observations of someone’s behavior patterns, thoughts, and emotions. For the individual in question, a diagnosis may seem to account for and validate a lifetime of experiences previously too diffuse or nebulous to put one’s finger on.

Receiving a diagnosis often gives individuals more compassion for themselves. It also gives friends and family members more understanding. These are incredibly important benefits of a diagnosis. This understanding also helps to connect people with needed treatments and/or therapies to help manage the condition and learn to live with it. 

However, the way we wield diagnoses currently result in several key problems. First, there is the temptation to place all people who fit into this diagnostic category into one lump instead of focusing on the specific challenges the person in front of you is facing and how to deal with their unique issues. I think this is an important tension. The diagnosis increases our compassion for ourselves and our understanding of others, but it sometimes keeps us from seeing the individual differences in experience. 

In addition, there are many times that the “diagnostic criteria” we use are based on a collection of symptoms, rather than some kind of objective marker. That’s fine because not everything can be measured with a blood test, a CT scan, or a biopsy. Using symptoms is also necessary because there are some diseases that we don’t understand the “why” or even the “how” of very well yet. However, there is something about the performance of delivering a diagnosis that conveys certainty, and often more certainty about the process than is really there. This is especially true in mental health for conditions like depression and PTSD, but can also be true for other conditions like fibromyalgia, or myalgic encephalomyelitis/chronic fatigue syndrome.

I say this not to diminish the impact of these conditions on a person’s life, quite the contrary. However, when diagnosis is based on a cluster of symptoms, then the diagnosis simply means that doctors have recognized this pattern occurring, not that they understand how or why that pattern occurs. Doctors often perpetuate this false sense of certainty, both by closing the book on looking for causes and by limiting further inquiry into actually managing symptoms. Unfortunately, it is not all that unusual to explain a symptom you are experiencing to your doctor, one that interferes with your life a great deal and be met with, “Well, of course, you are experiencing X, you have condition Y.” and the conversation ends there without proceeding to strategizing how you manage that in your life. 

As Gabor Mate puts it, “Diagnoses reveal nothing about the underlying events and dynamics that animate the perceptions and experiences in question. They keep our gaze trained on the effects and not their myriad causes.” For example, research in Canada showed that children born in December were 39 percent more likely to be prescribed medication for ADHD than children born in January (the cut off between grades for children in Canada). In other words, they weren’t being medicated because of a genetic, hormonal, or brain-wiring issue, but simply because their brains were less mature by nearly a year. Similarly, Mate notes Oppositional Defiant Disorder. “...these so-called ODD kids turn out to be the ones who lack sufficient connection with nurturing adults and have a natural resistance to being control by people they do not fully trust or feel close enough to…There is nothing disordered in resisting authority figures that, for whatever reason we do not feel confident in and safe with.” In other words, many people with both ADHD and oppositional defiant disorder have a clear reason why they act the way they do and medication would not address those reasons. 

Beyond a false sense of certainty, Mate notes that the current view of diagnosis, particularly, but not exclusively, in mental health, focuses on brain physiology and suggests that medicine is the solution to the problem. This perspective harms patients. It subjects them to unnecessary or inappropriate treatments, but also closes off solutions that could be more complete and helpful. 

Mate explains: 

Little in the training of doctors prepares them to wonder about their patients’ lived experience, much less to seek the sources of their malaises therein. Simplistic explanations, which require little time or emotional energy, are an attractive fallback position. Many doctors are intensely uncomfortable facing their own hidden sorrows and wounds…The gospel of genetic causation shields us from having to confront our hurts, leaving us all the more at their mercy. 

Patients too, would typically prefer to avoid looking deeply at their lives to find the sources of their pain. But I think that the authority doctors carry in patient encounters puts the onus on us to encourage that exploration. I have written before about how the overwhelm of a doctor’s daily schedule and how the heavy psychological burden they avoid dealing with limits a doctor's ability to be fully present and their ability to be fully human. As I write today, I wonder if part of the reason we agree to the maddening schedule is to facilitate that avoidance.  

As doctors we often underestimate the power of our words, the ways we become woven into other people’s stories. As author

Sophie Strand

wrote about her experience in doctor’s offices, “For most of human history medicine was not seen as separate from the world of ritual. There was an understanding that healing is not as simple as a pill. It is a complex performance act that primes a person’s immune system and boosts a person’s confidence such that they are more likely to heal.” Declaring that a person has a certain condition, gives doctors the confidence to discuss prognosis, or what to expect going forward. This can be helpful for patients’ plans from when to return to work to ‘do I need to start making funeral arrangements?’ However, in forgetting the power of our words, we often make things worse for our patients. There is a phenomena in medicine called the Nocebo effect, which is the opposite of the placebo effect. Basically, when we believe a disease or treatment is going to cause bad outcomes, it does. As Strand notes:

Doctors that no longer make eye contact and ask questions that cause you to doubt whether they remember you are engaging in a long-term nocebo experiment. Doctors that no longer perform physical exams are setting up a somatic doubt that they have properly “understood” us. Even when the diagnosis is correct and the cure if administered, we are deeply informed by this lack of confidence in our health providers. Patients who have low confidence in their doctors are less likely to have positive effects from treatments. When doctors list out bad side effects (even when they are fake) patients have shown a higher likelihood of developing these side effects.

She also shared her personal experience with this phenomena: 

After years of misdiagnosis and failing health, I received a proper diagnosis of mast cell disease and a genetic degenerative connective disease. At each doctor’s appointment, my specialist would list the things I should expect to go wrong with my body. Within six months I had lost more ground than I had in the previous seven years, manifesting many of the symptoms she had predicted. I wondered if she had given me a spell instead of a treatment. An incantation. A pricey one, too. She cost over a grand for each appointment. When I chose to become a noncompliant patient and stop seeing her my health evened out. I stopped deteriorating as fast.

In other words, the way we perform our diagnosis and treatment plan can change someone’s experience in their disease. When we create this story for our patients, particularly when we don’t actually have that much certainty regarding their life experience or the causes of their disease, we create a real, material worsening of their disease. Strand’s experience with chronic disease does lay a path for us in creating a more healing story. Her friend, Mary Evelyn Pritchard was expressing her experience with the same condition, “I think health isn’t about being healthy or pain-free. It’s about the amount of joy I can feel in my body and in my life”. 

What if I approach my patient not with a desire to categorize them, but with a desire to understand them? 

What if I can validate someone’s experience even when I can’t categorize it? 

What if I learn to sit next to someone, and instead of trying to fix them, I listen to them enough to become someone who can help them access more joy?