This is not a subject I usually talk about publicly. But that’s why this blog exists: to give me an outlet that is free from connections to the rest of my life, where I can be completely honest. So here goes nothing.
I have suffered from some form of mental illness as far back as I have memories (around age 3). I always knew there was something different about me, but even becoming a lover of language at a young age did not equip me with the terms to explain this difference to others, and even made my problems harder to understand myself. Many of my symptoms were present for years to decades before I had accurate terms for them: anxiety, depression, suicidal thoughts, attention problems, time distortion. Other symptoms I eventually named myself, after years of looking for a word or term, like Stress Induced Spontaneous Exhaustion.
Over a decade of visits with therapists, doctors, psychiatrists, and other professionals gave me a huge list of medications that don’t work for me, and another huge list of potential diagnoses that were all close, but no cigar. I had always had a propensity for doing my own independent research into what this indefinable illness could be, and when I lost my health insurance over a year ago, self help became the only weapon left in my arsenal.
My first six months without treatment was a blur of medication withdrawals that left me almost entirely bedridden. After the worst of the withdrawals had passed, I basically became my own therapist and diagnostician, despite still being unable to even get out of my bed except to shuffle the few steps to my attached bathroom, and occasionally manage a day where I could go into work, limping on atrophied leg muscles and battling constant agoraphobia and anxiety. With no professional help appearing on the horizon, I came to accept more and more the responsibility that I had, as the only person on Earth to actually live inside my head, to parse out what my illness was, what the question mark that always defined my life really was.
The binder I put together was a combination case file/medical record/journal, containing everything I could think of: date and time stamped records of all symptoms and med times, a breakdown of every symptom I’d ever had, lists of previous incorrect diagnoses, a month by month breakdown of my life including major and minor events that may have impacted my psychological state in any way (as a childhood abuse victim, piecing events together in a timeline proved to be an invaluable source of information). As time went on, the binder grew to contain areas to research, detailed coping skills, a comprehensive analysis of each of my symptoms individually, and deductions I could make by cross referencing all my data. Patterns emerged in every area I worked on, but no clear answers.
A wonderful book that I came across by sheer chance, Darkness Visible; a Memoir of Madness by William Styron, was of great help, particularly in understanding why the answers were so hard to find in the first place. This quote in particular (regarding depression): “As a clinician in the field told me honestly, and, I think, with a striking deftness of analogy: ‘If you compare our knowledge with Columbus’s discovery of America, America is yet unknown; we are still down on that little island in the Bahamas.'”
Psychiatry is still, at the end of the day, in it’s infancy, and many of the solutions being offered up to “cure” me of my ailments over the years were not much more effective or enlightened than trying some leeches and bloodletting. While our medical science overall has advanced beyond such medieval methods, psychiatry is one of the few specific fields where we are still stuck in the Dark Ages. Whatever you thought you knew as medical fact concerning mental illness 10 years ago is most likely already dis-proven, replaced by another explanation, which was retracted a few years later and replaced with some other reasoning or theory. Lather, rinse, repeat.
Vincent van Gogh was considered mad, insane, or crazy in his lifetime; those were the only terms for the incredibly nuanced arena of mental illness. Less than 100 years after his death, bi-polar disorder was a known and classified disorder with available treatments, and historians were/are confident that this was the disorder which afflicted him. Fast forward a few decades, and those treatments are mostly out of use because of inefficacy or being too harmful or barbaric, and the diagnosis has subsets and overlaps so much with other disorders that it can be difficult to correctly identify. The science is still constantly evolving, even if it’s evolution began too late for Van Gogh and millions like him. There are no guarantees that my story will not have certain similarities to his: 100 years from now, my illness may be completely quantified and understood, even if I’m not there to see it.
One would think that such facts would make me more despairing of my own circumstances, knowing that I may never fully have an answer, but that is not the case. Yes, I was born in an era where psychiatry claims to have a firm hold on the answers they are still desperately grasping for. Yes, I may never really know what is wrong with me, what caused it, or how to treat it effectively. But those facts simply make it all the more important that I continue to analyze and chronicle my condition; I am a part of psychiatry’s foundation, and I can shed light on what mental illness really looks and feels like, building awareness and helping doctors and researchers better understand the nuance and nature of it. I may never have answers, but continuing to ask the questions may help lead to a day where someone like me doesn’t have to be defined by a question mark.
That possible future is completely worth whatever pain and struggle it takes to help create it.