A Brief Survey of Misdiagnoses

I have a theory about illnesses that are systemic, auto-immune, rheumatological, chronic, or difficult to diagnose with overlapping symptoms and tentative diagnostic criteria. My theory is that most doctors don’t have a clue what they are doing when they hit this territory. As far as I can tell, modern medicine is loosely grouping together collections of symptoms, making observations about the patterns by which each category breaks down your wellbeing, and matching medications that are known to be helpful in some instances, while useless in others.

Here is a collection of illnesses that fit the above description (Incidentally, these are all illnesses that some professional, at some point, suspected I had - to the best of my knowledge, they were all incorrect).

• Multiple Sclerosis
• Ankylosing Spondylitis
• IBS
• Crohn’s disease
• Fibromyalgia
• Chronic Fatigue Syndrome
• Pelvic Pain Syndrome
• Lyme’s disease
• ALS

I believe the symptoms and the suffering of people diagnosed with these things are very, very real; people I love have received these diagnoses, and they have struggled to find working treatments for their conditions. My skepticism is toward modern medicine’s approach to classifying and treating these conditions.

I’m curious about more macro theories, about why some bodies just “self-destruct” along the lines of these illnesses, and what vulnerabilities and triggers are involved...

A book that recently piqued my interest on this is “When The Body Says No: Exploring the Stress Disease Connection” by Gabor Mate.



A fuller review on this book later, and of course, a video for the impatient types.

Prologue

The dramatic line to open this blog would say that my struggle with chronic pain drove me to the ends of the earth - to war zones, distant himalayan peaks, and isolated wilderness retreats - sometimes escaping, sometimes seeking. The substance of that statement is true, but the narrative is not. Those things happened, but they happened in the way life does, unfolding without a real-time thematic arc.

What is true is that I was a healthy, athletic, young-twenty-something, and then I wasn’t. My life became consumed by physical (and eventually emotional) pain. And this blog is about my ongoing journey to reclaim my life and sense of self. Or maybe even something beyond reclaim, we’ll see....

I’m launching this blog because....

1. After what felt like an unending journey through channels of human suffering and pain, I feel like if I do beat this shit - I don’t want to waste all the “knowledge”-- the baggage of healing theories and hypothesis and connections and epiphanies that have accumulated along the way. I want a log, so I can look back and say: “this here, this is what happened to me,” because I certainly don’t have the language yet, or the quick explanation to appease curious acquaintances.
2. Selfishly, I want catharsis. I want to disinfect my experiences from the emotions and pain that coat each memory.
3. The indignant part of me feels it shouldn’t have been this hard - I shouldn’t have suffered so long - it shouldn’t have taken this long for me to approach a framework of my condition that makes sense, and a road to recovery. The compassionate part of me agrees, and is compelled to chronicle my own compass-less bushwhack through the medical system, if only to save others a desperate google search, looking for a way to heal themselves. Because desperation is what most characterized my journey - the feeling that there were no answers, or worse, there were answers, and I’d never arrive at them. And that’s one of the most terrible feelings I’ve known.

[I am soaking my lower legs in warm water with epsom salt and baking soda as I compile this post. It’s a new ritual aimed at improving circulation. Just one of many ways I’m trying to beat this thing....more on that to come]