I've always considered myself pretty knowledgeable when it comes to mental illness. Psychology, after all, is one of my main interests. However, my big project for my final class, a LibGuide for teens about mental health, taught me a lot I didn't know. Categorizations have changed a lot over time, and there were many conditions I came across that I hadn't heard of before. In fact, the amount of work I expected the project to take ended up at least tripled because I had to keep revising my organizational structure. Not only were there many changes in the official DSM structure in 2013, but there are a number of conditions that cross categories.
More than anything, the project made me consider how arbitrary human categories and labels can be, at least when it comes to health. It's something I've experienced in my own life, and it's something I could see in this project. It makes sense, of course. The mind and the body existed long before we gave them names, and the lines we like to draw, the boxes we create, don't exist in nature.
Language means a lot to me, as a writer and a person. The names and labels we use grant us power over the world and ourselves. They make it easier to understand our lives. I think it's important that we have that. Yet language (and science) is imperfect, and it's important to recognize that there are areas where the lines start to blur and our categorizations fail. Just because things, or people, don't exactly fit into established parameters doesn't mean they don't exist.
I see this with both my chronic and my mental illnesses. Even separating the two like that is a questionable prospect. The mind is a part of the body, after all, and most mental illnesses are chronic in nature. Then there's the fact that people with my chronic illnesses are more likely to suffer from mental illness. Doctors are unsure whether that's from the stress of being chronically ill or whether there's a more physical connection. A gene connected to pessimism has been shown to be more common in fibromyalgics, and medical science is showing more and more that the mind and body are intrinsically connected in ways we don't quite understand. In particular, the digestive system and the brain have a significant effect on each other. But the brain is the part of the body that we understand the least, which is partly why there's so little knowledge about the conditions I have.
The chronic illnesses I have all belong to an area of medicine that you might call "a great big blob of mystery." There's a long list of these conditions that have a fair amount of comorbidity with each other and that all seem to be related to dysfunctions in the way the brain works. Many doctors call it an issue with the brain's "software." Yet there's not a lot understood about these illnesses. The medical establishment continues to struggle with categorizing and labeling them, and I'm sure things will continue to shift as more research is done.
For now, in the chronic illness arena, I've been labeled with fibromyalgia, chronic fatigue syndrome (CFS), interstitial cystitis, mild postural orthostatic tachycardia syndrome (POTS), irritable bowel syndrome constipation type (IBS-C), and mild premenstrual dysphoric disorder (PMDD). These conditions all overlap, with fibromyalgia and chronic fatigue syndrome in particular being difficult to separate. Patients complaining primarily of chronic pain get diagnosed with fibromyalgia, while patients complaining primarily of chronic fatigue get diagnosed with CFS. Yet a large percentage of patients, including myself, have both. And there are certainly more conditions in the blob of mystery that I could develop in the future.
While having a unique nature of its own, the blob of mystery touches not only the mental illness sector but also the autoimmune illness sector. Fibromyalgia and CFS both show dysfunction in pain processing and in the fight-or-flight response, and recent research indicates autoimmune-related inflammation in the nervous system. Interstitial cystitis has autoimmune and pain processing issues, while POTS is one of a number of autonomic failures, relating to the same systems as those that work with the fight-or-flight response. IBS may also be related to pain processing, the fight-or-flight response, and autonomic failure. Finally, PMDD is believed to be an abnormal brain response to hormonal fluctuations, leading to mood disorder symptoms and excessive PMS. It's categorized both as a physical and a mental condition.
There, in the mental sector, my main diagnosis is obsessive-compulsive disorder. I have a primary showing of moral scrupulosity or religious OCD, and many people would call my presentation of symptoms "Pure O." Yet I've experienced a wide variety of OCD symptoms, and OCD isn't the only mental illness I've dealt with. I've talked in the past about my struggle with body dysmorphic disorder (BDD), an obsessive-compulsive type disorder focused on body image. (BDD also qualifies as being a psychotic disorder in many cases, because sufferers can experience a delusion that their body is flawed in a way that it is not.) Related closely to the BDD were my two-year struggle with atypical anorexia nervosa and my continuing struggle with body-focused repetitive behaviors (BFRBs), another obsessive-compulsive condition. At the age of three or four, I experienced brief psychotic disorder. At the age of nine, I suffered from full-on melissophobia, or an extreme fear of bees. (I still experience a lot of fear when I see a bee--or a wasp, for that matter--but it's no longer to the extreme, life-disrupting level that a phobia requires.) Most recently, after having a dissociative response to extreme interstitial cystitis pain, I've begun dissociating at random, episodes that could qualify me as having derealization-depersonalization disorder.
Then, just to confuse the line between "chronic" and "mental" illness a little more, during the LibGuide project, I realized that my brothers and I also grew up with developmental coordination disorder, otherwise known as "being a really clumsy kid." (A current companion on Doctor Who, Ryan, has this condition--it's also known as dyspraxia.) In my case, I kind of grew out of it--or rather, I grew into fibromyalgia. In the past, I always thought of these symptoms as "pre-fibro." I'm not sure exactly how to look at them now. The same goes for the breathing issues I used to have while running (but not while biking)--vocal cord dysfunction, as it was originally thought, or pre-POTS? I'm just not sure.
Listed out like that, all those conditions may seem like a lot for one person to deal with. And I'm not saying they're easy. My life is very significantly affected by my health issues. Yet at the same time, it's not like I'm experiencing these conditions piece by piece, separate from each other. In real life, it's often easier just to categorize them as "my chronic illnesses" and "my mental illnesses" (with some conditions crossing over in the middle). After all, every condition is only a combination of multiple symptoms, and many of those symptoms appear in multiple conditions. Though it's not very accurate, sometimes I even simplify it down to the two main issues that I started off with: "fibromyalgia" and "OCD." In my mind, those will probably always be the "core issues" at hand, even though they're not my only.
My life is only one such example of the way these illnesses bleed into each other. Most people with mental and/or chronic illnesses could probably point to other, related conditions they've also suffered from. Even the categorizations themselves and the ways they change and cross over, as I said at the beginning of this post, indicate how meaningless our labels can be.
Ultimately, the categorizations we use don't tell the whole story. They just help us clarify it some.
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