The Grey Between

Hello my Zebras and Spoonies! Thank you for coming and hanging out with me today. I’m glad that you are here. Today I want to talk about the way that the human brain likes to put things into boxes.

When you get a diagnosis, doesn’t matter which one, you start to consider yourself and all your symptoms or traits. You try to decide which of those traits are because of this diagnosis and which are because of something else. In the case of getting a mental illness diagnosis, you start to wonder how much of you is really you and how much is your disorder. And when you have more then one diagnoses, like most of us do, we find that there are these weird areas of grey that live between our diagnoses.

For an example: I am diagnosed with both Autism and Gastroparesis. These seem like completely different and unrelated diagnoses. Yet, there is this place that there symptoms or traits overlap. Both can make it so that a person does not feel the sensation of hunger. The cause for each is completely different, but the result is the same: the person doesn’t feel the physical sensation of hunger.

In the case of Autism, it is because of interoception, or more accurately because of a disorder of it. Interoception is a lesser-known sense that helps you understand and feel what’s going on inside your body. People who struggle with the interoceptive sense may have trouble knowing when they feel hungry, full, hot, cold, or thirsty. It’s an issue with the way that the brain processes the information that the body is sending it. In the case of Gastroparesis, the issue is that the stomach takes a long time to empty and thus the body doesn’t send the hunger cue because the stomach isn’t ready yet to receive more food.

In either case, the perception is a lack of the physical sensation of hunger. See how there is this grey area between these two completely unrelated problems? Now, it is tempting to say that knowing the cause of a person’s lack of hunger is simply splitting hairs and unimportant, but that’s simply not true. If you are not feeling hungry because your stomach is still full, you shouldn’t put more food in it as there is no physical space to receive said food. On the other hand, if you are not feeling hungry because your brain is not receiving that signal, you should probably eat something anyway so you don’t starve to death. The cause of the problem leads to very different treatments. But sorting out that cause is rather difficult.

And that’s just one example. All the diagnoses on my diagnosis list have areas of overlap with each other, creating these large, ambiguous areas of medical grey that leave treatment options clouded and confused. Research has its limits. All these areas of grey cannot be explored with research when the medical field is still struggling to get the proper funding to properly explore the areas of black and white. So, where does that leave all of us with chronic illness and our grey areas?

It’s a question that doesn’t really have an answer, but something that I think about a lot both as a patient and a nurse. A person comes in with abdomen pain and there are several diagnoses on their list that include abdomen pain as possible symptoms. Does that mean this is a flare or is this a new problem? Sorting that out can be really difficult in the best of circumstances. But most patients don’t get the best of circumstances. Most patients get doctors that dismiss their personal experiences and their body awareness. And all too often the result is an acute problem like appendicitis or pancreatitis being written off as a chronic problem like IBS or constipation.

The truth of the matter is that the medical field has to do better. I’m not certain what all the solutions should be or what a better system would look like, but I am certain that the medical field has to do better than it currently is right now in the United States. With around 60% of Americans having some type of chronic illness, doctors and nurses cannot continue to choose not be better equipped in managing patients with chronic illness. Both in the context of a chronic illness flare and in the context of an acute illness on top of a chronic illness.

One thing that I know for certain is that there is a lack of communication between the providers and the patients on a meaningful level. Sometimes that is system driven because we are asked to see more and more patients in less and less time. But there is also a long list of biases that we as providers are carrying around with us that we need to make ourselves aware of. Having biases is a normal part of being human. We all have them. But it is essential that we know what those biases are and are mindful of them while we are providing care.

In the context of COVID all of the things that have been plaguing the health care system have only been getting worse. The system is in crisis and squatting on the precipice of collapse. I don’t have any answers for moving forward from here. But I know that what we are doing isn’t working. It’s not working for the health care workers who are burning out and are struggling in an unstainable situation of chronic stress. It’s not working for the patients. At this point, it simply makes sense to make change. This burning dumpster fire that we call our healthcare system isn’t working. It’s time to try something new and different.

And that’s my tangential ranting for the day! Thanks for visiting and stay well.

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