Why Labels Matter

Recall Jeremy from our last post. What I did not mention was that he had a history of substance use, starting at age 14, in addition to his untreated ADHD. I did not want to muddy the opinion you had of him as a good person. He was also a talented artist, poet and musician.

The label ‘Substance User’ trumped all his other titles and characteristics. It trumped all the good that had done since moving into permanent housing, and the 12+ months that he had spent abstinent from drugs and alcohol.

So powerful is that label that he was denied stimulants—incredibly effective drugs—by his healthcare provider to treat his ADHD and the impulsivity that contributed to his substance use disorder. This medication would have helped him focus enough to hold down the part time job he wanted, working for City Sanitation Services in downtown Los Angeles.

What’s in a name?

Labels provide us with a sense of our identity and the identity of others. At their best they can be positive and empowering, highlighting differences in ideals, gender, culture and personality. They can let us recognize the differences in each other, and appreciate the unique experiences, perspectives and strengths that we bring to the table. 

At their worst, they stigmatize and breed assumptions and expectations that are typically just plain wrong. When we meet someone for the first time, it takes a fraction of a second for us to form a first impression of someone. We instantly like or dislike them. We subconsciously create the narrative in our heads about who they are and what they stand for. We assign them a label, loaded with all the prior experiences that we have had of people who look or sound similar. 

Evolution plays a role

These automatic assumptions evolved as an evolutionary survival mechanism. They helped us make decisions quickly and would ultimately keep us safe. Somebody with a mole on their nose wrongs me, I’m going to assume the next person with a mole on their nose is up to no good, based on next to nothing.

Labels in Healthcare

In healthcare we use labels liberally. They provide a common language for us to identify and understand brain-based medical conditions. These diagnostic labels allow for clear communication. They ensure that everyone involved in the individual’s care is on the same page, preventing unnecessary intervention and harm. It is why misdiagnosis is such a big deal. The number one misdiagnosis, or mislabeling, occurs when brain strokes are missed. The outcomes are worsened by the wrong type of treatment, resulting in disability.

Labels within brain-based medical conditions do serve their purpose. They can act as rallying points for parents, caregivers and organizations advocating for increased awareness, research and policy change. Think of major organizations such as Autism Speaks, or Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD). It is very clear who they support. 

My struggle with using labels

The issue I have with labels is that within each brain based medical condition, such as ADHD, there is a spectrum of qualities that that single word cannot fully convey. Behaviors vary from child to child, gender to gender, age to age. No two children will present the same way, respond to the same medications similarly, or benefit from the same form of therapy. Individualization and uniqueness is left behind, because it is easier that way. Short healthcare appointments do not allow for customization.

Making matters worse is that, in many situations, negative connotations have latched themselves to our clinical diagnostic labels such as ADHD, Autism and Major Depression, for example. For each of these three, I can guarantee that in your mind's eye you can conjure up an image of the person that represents each of the above labels, based on your prior experiences from real life and media exposure. 

Labels don’t paint the whole picture

If you are a mother of a child with any of the above, the image will likely focus on all the strengths and vibrant qualities embedded in that label. If you are not intimately connected to someone you care about with any of the above diagnoses, the pigeonholing will likely be negative. It’s automatic and based on prior exposure, which for most people can be from poorly handled situations. 

In another recent post I discussed the Preschool-to-Prison pipeline here, and can only imagine how one poorly managed interaction with a student exhibiting behaviors that teachers and administrators are not equipped to handle, lays the groundwork for all future similar situations being handled as poorly, or worse.

A rallying cry for using ‘Brain Based Medical Conditions’

That is why I like to use the term ‘brain based medical conditions’ to describe psychiatric mental health conditions. Neither of the words ‘psychiatric’ or ‘mental’ in isolation describe a positive quality. Those words when you hear them, should not trigger any internal red flags in your consciousness, but they do.

We forget that the brain is just an organ, like the kidneys, heart or lungs, deserving of the same care, dignity and attention. An individual with kidney disease may not feel stigmatized (though I appreciate that a percentage might). 

They are certainly not portrayed as the bad guys in films: out of control, ‘psychotic’, unhinged and ultimately dangerous. The hero stops them and saves the world. Something is wrong with people with psychiatric mental health conditions, they are intrinsically broken. As healthcare professionals, we need to update the narrative. 

So, while labels may provide a starting point when discussing childhood brain-based medical conditions, they certainly do not capture the real lived experiences of each child, their family and their one-of-a-kind journeys.

As a Psychiatric Mental Health Nurse Practitioner, it is my job to educate and advocate for children with brain based medical conditions and their beautiful diversity of thought, behavior and choices. Society will catch up, but until they do, you are welcome here at Mommies In Mind.