Posted by Whittier Strong
Writing about one’s own disabilities online is always a huge risk. One of the first things hiring managers do these days is google the name of an interviewee to uncover any reason they might not make a suitable employee. And whilst it’s illegal in the United States for an employer to deny a job solely on the basis of a disability for which they can make a reasonable accommodation, it is almost impossible to prove this is why you weren’t hired. So to be able to go online and say, “I have a disability” can threaten your future livelihood.
But there are things I value more than my future employability. First, I value truth. I often say that my first obligation is to truth. I really can’t imagine living any other way. It’s why I use my real name, rather than a pen name, for this blog. If I say something, I should be able to stand by my words. I also highly value the dissemination of knowledge.
Another of my adages is, “Knowledge doesn’t care who knows it. It only cares that it be spread.” One of the amazing things about the internet is that, if you have learnt something, you can share it with the whole world and they can access it, for all intents and purposes, free of charge. The site-administration tools WordPress provides offer me a glimpse at how people find my blog and what they want to learn. This information lets me know that I am indeed saying some important things, some of which are hard to find elsewhere. (More on that later.)
Finally, I believe in freeing people from guilt and shame. So much stigma surrounds disabilities, particularly mental disabilities, that we don’t really talk about it, which perpetuates the shame. Indeed, I myself struggle to simply acknowledge my disabilities without crumbling into a heap of apologies.
It took a long time to figure out exactly what my disabilities are. It’s not an exact science. We do not (yet) have a way to instantly identify every disabilities from a blood draw or suchlike, and even if we did, a single disability can exhibit itself in radically different ways from one person to the next. At present, doctors look at symptoms and match them against a rubric. Some disabilities look very similar but are treated differently. There can be trial and error involved.
I have wrangled with a number of misdiagnoses. At one point I was diagnosed with borderline personality disorder, but every doctor since has thought this diagnosis is way off. Indeed, when I started to look at the associated behaviors, I couldn’t see how I got that label, other than that I had early-childhood privations and that I am not as mild-mannered as the typical Minnesotan. I have been informally diagnosed with autism by a lot of people–not by professionals, but curiously, by a lot of people who are diagnosed with autism. Again, I have too many behaviors to indicate otherwise, and what symptoms I do have that resemble autism can again be attributed to early-childhood social and material deprivation.
But the most significant misdiagnosis I had was bipolar disorder. And I understand why I got that diagnosis. The label was attached to me upon a cursory observation, when I was agitated, thinking and talking very fast, and having a lot of trouble with my sleep. And so I labored under the diagnosis for over thirteen years.
But then I started seeing a new doctor, and he couldn’t observe the manic symptoms associated with bipolar disorder at all. Indeed, when I was “agitated,” I did not exhibit classic symptoms like grandiose thinking, excessive trust in others, and financial irresponsibility. Likewise, my sleep disturbances were not in a pattern of staying up a long time and only sleeping very little–I was sleeping a long time and forcing myself to stay awake a long time in a failed attempt to reset my circadian rhythm.
In the end, my diagnosis of bipolar disorder was revealed to be three separate disorders that, when combined, looked like bipolar disorder at first glance. Major depression is the most obvious, I think especially to those who know me well. I think most people have a basic understanding of depression, though some believe that it’s something that can be “snapped out of” through sheer force of will. There is no scientific evidence that it works that way. It’s often a long, slow slog out. That’s not to say that there aren’t actions one can take to help one out of a depressive state. It’s just that it’s much more than a snap of the fingers.
I talked some about generalized anxiety disorder yesterday. I am always wound up, some times more so than others. It takes a great deal of effort to relax, and even the pressure of trying to relax can crank up the anxiety. This might be the condition that plagues me the most on a day-to-day basis, because it most affects how I interact with people. Always people pressuring me to “take it easy,” “get a sense of humor,” and “relax” so that they can feel more comfortable around me, and all the pressure just makes it that much harder.
The last of the triple threat is something I’ve talked about some here in the past. It has a few names, including hypernychthemeral disorder and non-24 sleep-wake disorder. It’s a very rare condition that mostly affects blind people (which I am not). Though the medical community is not 100% certain of the cause, it is mostly likely related to how sunlight influences the production of hormones responsible for waking up. Basically, my body tries to wake itself up one hour later in the sleep cycle than it does for other people. So, whilst I sleep a normal number of hours (though at the high end of normal–10 hours–this has not been a concern to doctors), I naturally want to wake up one hour later and go to sleep one hour later every day, putting me on a 25-hour cycle. Thus, untreated, I cycle from being a day person to a night person back to a day person over the course of three or four weeks.
It took a long time to get a stable treatment regimen together. Most medications used to treat depression can actually heighten anxiety and, in my case, cause serious heart issues. And though the treatment of hypernychthemeral disorder mostly consists of an inexpensive over-the-counter medicine, it is the only known treatment for the condition, so until I had a proper diagnosis, I could not maintain long-term stability in my sleep patterns. Fortunately, in spite of the misdiagnoses, most treatments for bipolar disorder are similar to the treatments for major depression and generalized anxiety disorder. All along, it’s been a gradual progress of zeroing in on the best treatment for me, regardless of diagnosis. This makes sense, since modern medicine, for better or worse, focuses on treating symptoms rather than diagnoses.
My progress under my current regimen has been uneven but gradually improving. I’m waking up the best I have in my entire life. Problems that used to weigh me down for weeks or months now only bring me down for hours or days. I’ve worked on adding activities in my life to improve my mood and general health.
However, I also have a number of disability support services that aid my improvement. Mostly, I have two workers I meet with weekly who assist me in compensating for and overcoming my disability issues. Their support has been instrumental in my improved health, and the goal is to keep improving to the point that I don’t need their services anymore. I am well on track for that goal. It’s just going to take some more time.
No one should have to live under the pain of stigma, and if sharing my story can help someone to live a little freer, then I know I’ve done my job.
About Whittier StrongWhittier Strong is an MFA student in creative writing at the University of Alaska-Fairbanks, with a focus in nonfiction. He graduated from Metropolitan State University with a BA in creative writing. He has special interests in sociology and philosophy.
Posted on 16 May, 2013, in Personal life, Uncategorized and tagged anxiety, depression, disability, employment practices, generalized anxiety disorder, meta, non-24 sleep-wake disorder, personal life. Bookmark the permalink. 1 Comment.