A diagnosis is like the title of a story, and just like the title of a story it is a way of expressing a greater meaning in fewer words. If I say “Alice in wonderland”, anyone who knows that story instantly has ideas around a girl falling down a rabbit hole into a mythical land with red queens and magical creatures. If I say “disc protrusion”, anyone who knows the term instantly thinks of back pain, inflammation, possibly about the dangers of heavy lifting, or the ways it might be treated. The same goes for any diagnosis; anxiety, broken leg, asthma... you get the idea.
Stories are really useful. When we hear a good story it gives us empathy for the protagonist. We get to live for a time in their world, feel things as they would, hear their point of view as if it were our own. They can give us warnings and ideas for behaviour that may help us navigate our own lives, Alice in Wonderland might teach us that resourcefulness is a gift, or to be wary of believing what the wrapper says. They can add meaning and connection to our lives; if the character is like us we may feel that we have a kindred spirit, that if Alice is also a “dreamer” maybe that’s okay, and maybe we’re not alone. They are a way of distilling a complex idea into a simple and often more meaningful form. They wrap a whole range of separate ideas into a single narrative.
A diagnosis can do the same. By saying you have a disc protrusion, a radiologist can inform another medical professional in two easy words what they have found on a scan. These two words give the doctor/physio/chiro/whatever an idea of what is going on, what is likely to improve your condition and what is likely to make it worse, along with other valuable information such as how long it might take to heal, and how it’s likely to progress. A diagnosis can help you explain to your friends why you don’t want to join them on their hike - rather than having to go into a long story and explanation of how sore your back is, you can say “disc protrusion” and most people will get the idea. If they have had one, or know someone who has, odds are they will understand your level of pain and offer empathy for your predicament. It saves a lot of explaining and is far more likely to be met with understanding.
So, particularly as a health care provider (and avid reader!) I believe that both diagnoses and stories can be really useful for interacting with the world. However, in both cases, I think there are inherent risks.
Just like a story, a diagnosis is not your life. Both are based upon a group of ideas that humans agreed to believe in. These ideas have been edited and added to over the years by various people and are open to the interpretation of the reader. They are a combined story of human existence, they are not your story. That lengthy tale of how you hurt your back, what that feels like to you and how you feel that is progressing, that is your story. Your own subjective interpretation of your life with minimal blurring from external sources (I say minimal because by nature of being human and the use of language itself there will always be conditioned ideas that you have inherited). And this is the problem; your story changes significantly over time, Alice in Wonderland has not. By describing your experience in terms of a diagnosis you are at risk of “freezing” yourself in that story - like reading Alice in Wonderland over and over again without ever picking up a different book. Now I love Alice in Wonderland, but I don’t want to read it for the rest of my life.
The next problem is around belief and identity. It sounds ridiculous that someone might read Alice in Wonderland and find themselves believing suddenly that they are Alice and that they are in Wonderland. That’s absurd, and yet we see it a lot with a diagnosis. How many people do you know that say they “have a bad back” due to a disc protrusion from 15 years ago? Or perhaps a better example, how many people describe themselves as anxious? Or autistic? Where then is the line between you and anxiety? In this case, I’m sorry, but the caterpillar was right; you’re not the real Alice. She doesn’t exist, she is an idea written on a page.
If we live in Wonderland, then every word of the story must be true. “Hey, I never noticed a flying talking cat, but there must be one somewhere cause I live in Wonderland now”. I’ve done this one personally. Having been described as anxious, I looked up exactly what that meant. Sure enough, most of it described my experience pretty well, some of it didn’t seem so accurate. Over the following weeks, however, I started taking note of those other missing aspects as they began appearing in my life. “Hey, maybe I do that thing after all?!” Now, maybe I did, maybe I didn’t. Maybe this was a huge hit of self awareness, or maybe after reading about anxiety, my brain went about proving that all aspects of the diagnosis were accurate.
Now please understand me, I am a healthcare provider. I use diagnoses on a very regular basis, but I am so wary of the trappings they create when we over identify with them. As is often argued with regards to race, religion, sexuality... we are all human. To what extent we identify as “normal” is up to us. So I encourage you, if you have a diagnosis, can you question it? Just one aspect? Can you question the permanence of it? Or it’s prevalence in your life? Can you question whether you feel you need it for validation of your experience? There is nothing wrong with any of these things, but can you be mindful of what you think and feel, and can you recognise it as a story, and can you find where it might be separate from your story?
Can you see life from the perspective of someone experiencing the world in a particular way today. Perhaps tomorrow will be similar, perhaps not. Perhaps others will understand, perhaps not. Perhaps your experience is like someone else’s and perhaps it isn’t. Take the time to feel into YOUR story, your true story... and give someone close in your life the opportunity to hear that story, rather than the story the past collective has given you. Perhaps that story is agonising, and I am the last person to diminish that, but I want to hear what it means to you, today, in your words, so I can better understand. And tomorrow, tell me your new story, similar or different as it may be to today’s.
