One of the problems that I and people with diagnoses similar to my own face is the problem of hidden disability. While a Sherlock-esque character could easily deduce much of my condition from my appearance, it isn’t a thing that people notice without looking. On the whole, this is most likely strictly preferable to the alternative, of having a more obvious handicap, such as being in a wheelchair or on oxygen (or perhaps rather, since my condition has at times had me in both situations, I should say, permanently), it raises a whole host of other problems.
Here’s the situation: on my best days, my capabilities are on par with an average person in almost every respect. I say “almost” solely because, even if everything goes perfectly health-wise, I’m still going to be monitoring and thinking about all of it in the back of my head. And realistically, things never go perfectly without continued micromanagement. But despite all this, I can function at a normal level. On such days, I look and act like a normal person.
On the other hand, on a bad day… well, on a really bad day, I’m in a coma, or unconscious, and don’t wake up. On a slightly less bad day, I might be confined to my bed all day, forced to watch helplessly from my window as the world goes by. On such days, my mind is generally in such a state of confusion that I do not use more than a baker’s dozen more words. On a regularly bad day, I might walk as far as to the downstairs couch and speak as many as fifty words.
Such days make up between 30% (extremely generous) and 95% (exceptionally bad) of all days in a year. These wide discrepancies are due to variations in the selection of cold, flu, and other illnesses in my vicinity, and depending on how one counts. Most days I spend at least part of the day unable to go about my business due to health, even if I’m fine the rest of the day. That’s the other part of the equation: I go from being dandy to being at death’s door at the drop of a hat, and without warning.
Naturally, if I am unable to leave the house, I tend to avoid interfacing with people. Even when I am physically capable, and by most standards coherent, I see it as plainly disrespectful to deal with other people when I am cognitively impaired, and would rather postpone a meeting than beg pardon for not being able to understand something they said that I would normally be able to grasp instantaneously. Others can argue that this is a fault with me, but I have dealt with enough people who have grown upset or concerned to see me trying to push through that I do not wish to repeat the ordeal.
I can also be painfully shy at times. Like most people, I have a romantic ideal of myself which I prefer to show off to the world in place of the more flawed reality. I like to be the renaissance guy: the witty, intelligent, cosmopolitan, intellectual, organized, well spoken and written, with a palpable aura that engulfs those around him; a frood who knows where his towel is, if there ever was one. And when part of my life doesn’t jive with that image, it is edited out of the narrative. The weeks or even months at home sick are glossed over, and the story skips from something that happened in November of 2016 to the events of February 2017 without even a pause.
This isn’t a sinister plot to make me sound like a more interesting person than I am or anything. There’s really just not much to be said about being sick for such a long period. Having a migraine for a week and a half is pretty much the same experience as having it for a few hours, just longer and slightly more intense in places. Being conscious of the fact that others don’t know what’s happening, to my detriment, doesn’t make me any more likely to post on Facebook affirming that I’m still sick for the eighth day in a row, and rumors either of my death or retirement to the Bahamas are much exaggerated.
Rubbing my misery in other’s faces by describing my symptoms in detail goes against this instinct. It goes against my efforts to create a Potemkin village of my life, where I always get everything I want and there are no problems, because good things happen to good people, and I’m a good person. There is also fear. Fear that others won’t believe me when I describe my symptoms, because how could I deal with such trials discretely out of sight? Or fear that they’ll believe that the symptoms exist, but that they’re my own fault, because I don’t do a good enough job treating them; that they’ll think they know better than I do, and refuse to support me in handling my own medical issues.
There’s the fear that others will want to exclude me, either because they believe me to be contagious, or because they think keeping me out of trouble is for my own good. I’ve even had people, upon being told of my symptoms, suggest to my face that my illnesses are divine or karmic punishment, and that I should feel ashamed for whatever it was that makes me deserve my fate.
And so I return to society exactly as I left, without any sign of the ordeals that I have endured in the interim, with only vague explanations of being sick. And so those around go on without understanding my problems, or what they can do to help. Possibly they wonder why I keep needing so much slack, or what I do when I’m not around, since surely I can’t be sick all the time. After all, it’s not like they know anyone who’s regularly sick for so long. And they’ve never seen me sick.
One of my earlier doctors had the advice to fill out all paperwork for accommodations assuming a worst case scenario, as a means of making people understand the possible consequences of having to go on unsupported. This is a helpful notion, but for the fact that the worst case scenario is always the same: I drop dead.
This is accurate, and a very real danger, but somehow never gets the point across. Guest services at Disney, for example, doesn’t react to being told that I could drop dead, but will rush to get me a disability access pass upon being told that I could have a mere seizure. I suppose this is a quirk of human nature. Death seems faraway and intangible compared to the concrete, visceral experience of a person having a seizure. Perhaps moreover, since death is to some degree inevitable, if not necessarily imminent, it seems like the lesser of the evils compared to an entirely avoidable pain. Dropping dead seems less real or hyperbolic than a seizure.
Hence the problem of communicating the gravity of the situation while still making it seem real. It is a delicate balance; a difficult story to weave and act to maintain. I credit any ability in the areas of persuasive writing and public speaking to the experience I have gained involuntarily from these exercises; from having to always find and maintain this delicate line which allows me to get what I need; communicating and proving to others that I have needs, without giving up all my cards and being completely at their mercy.
