On Invisible Disabilities

Ever known someone that just gave too much detail for comfort? Like the sort that talks about how their last bowel movement caught one of their hemorrhoids wrong when the drive through speaker says “Welcome to Taco Bell, How are You Doing?”

Yeah, I knew a few of those growing up. And I swore that’d never be me. Nope, I adopted the Man Code of never complaining, and more importantly, never admitting anything is wrong. Even if there is a mountain of evidence forming that shit-ain’t-right.

Even with the adopted Man Code, people will notice. Maybe first, close friends and relatives see uncharacteristic slips in behavior. Or perhaps old acquaintances notice a dramatic difference when reuniting. More than once, someone looked at me, and with genuine concern asked – “is everything OK”? You’d be surprised how many times it took until I realized the answer was No. No, I am not OK.

Intellectually, I knew I felt bad. Every few years, I’d feel just bad enough to start seeing Doctors about it. Usually with the same result: a few tests with inconclusive results. Depending on how bad bad enough was, I might go for some more tests or visits.

https://xkcd.com/883/
An actual conversation…

You can lie to yourself all you want to but shit gets different when you’re married. Friends won’t necessarily see but your partner damn sure will if an hour at the hardware store leaves you laid up for the rest of the day exhausted. That’s not even getting into the long term effects on mental health. There’s a reason chronic pain syndromes are referred to as “suicide diseases“.

Unfortunately, many of the tests to determine exact causes are hospital out-patient procedures and I’m weary of such until the pandemic “cools off” at least slightly. A persistent patient that actually pushes to figure out what’s going on might easily take 2-3 years in normal times to get a diagnosis if they can even make one. Diagnostic tests and observation only go so far. Several disorders in the medical literature are surprisingly recent, discovered only with the advent of better testing and more accurate imaging or instrumentation.

I started writing this post roughly a year ago and recently discovered it while posting my traditional New Year’s goals. Fin’s been trying her best to kick my depressed ass back into action and I’ve come to realize that maintaining this blog is one of the few things that I find generally motivating. Even if it’s writing about stuff that just sucks. When we bought the domain and started the blog – over 10 years ago – it was all about trying to find a way out of the suburban rat race. Somehow in all that time, I lost sight of the little goals and achievements worth mentioning. Worse, it seems the many online communities aligned to such goals have gone off the rails into crazy town.

In any case, part of not clicking publish before was the misguided notion that the story ends with a diagnosis and somehow clears everything up closing that chapter in my story. I’m not sure if that comes from a belief that a clear diagnosis would allow better treatment or simply give me a bullshit label to apply excusing my own perceived failures. Regardless, I’ve found writing a meaningful outlet to mentally resolve such things and so here we are. For the curious (and to avoid any accusation of vague booking) – my symptoms include chronic fatigue, altered sensation, and severe joint, muscle, and nerve pain. On good days, I’d be happy to take my doggo for a walk around our property (easy to hit a full-on mile that way). On bad days, the distance between bed and shower seems like running a marathon.

After some considerable thought I’ve decided to finally click publish here for a multitude of reasons. Primarily, I see covering this aspect of my life as an important part of the blog here. Perhaps for myself. Perhaps for others dealing with similar issues. I’m a proud person and definitely tend toward a huge superiority complex. While I don’t agree with the idea of “God’s Plan” or “destiny” shaping such challenges, I do think some things in life are best treated as obstacles to learn from. Life just happened to pick this cudgel to teach me humility.

How much of the toxicity of social media stems from only showing the best of ourselves – reducing enormous efforts into single posts giving illusions of so many instant successes across the world? I’m excited about the upcoming year as Winter sets in, Spring approaches, and I finally make cool progress on some long running projects. If Fin and I hit some major wins this year, I hope the backdrop here stays in focus keeping us grounded, and reminding everyone else – we are all only human.

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