Note : I originally posted this on FB yet it remains the most honest explanation of my descent into illness so I'm reposting it here for posterity.
Over the past years I've posted messages about being chronically ill and it's fairly clear that I'm housebound and seriously sick; I've been this way since late February of 2014. I'm currently diagnosed a constellation of ill understood disease processes: POTS, Ehlers Danlos Type 3, Mast Cell Activation, severe ME/Chronic Fatigue, chronic SIBO, severe endometriosis, etc... However, for years and years before I physically collapsed -- dating back to 2007 when I was initially diagnosed with ME/CFS by Jose Montoya -- I was slowly falling sick in a classic autoimmune fashion (it's fairly clear that some autoimmune process is driving this according to tests) but I was simultaneously blaming all my symptoms on off and on alcohol abuse issues and then .5 mgs of ativan. (Not to say I didn't have a substance abuse issue -- I did.) But for anyone who knew me during this period of time, they may be confused. And I feel the need to provide a long-winded explanation of my past explanations of periods of malaise&torpor, which were a mixture of exaggeration of my substance abuse issues, complete denial, and some truth.
When you have an enigmatic autoimmune disease, the truth is difficult to comprehend. The truth is like a disease-addled zebra that teleports in and out of your life until you really to believe you're off your rocker. Or, at least it was like that for me. "Did that month long bout of torpor and pain actually happen because -- well -- I'm sorta ok now?" I learned to distrust my most visceral instincts; that distrust of the corporeal does something to a person. I became divided. One part of my body was sick, another hated myself for thinking I was sick (my paranoid "nervous exhaustion" I thought to myself again and again), and another an interrogating detective. "Is your back really in agony or is this psychosomatic?" I disconnected from myself and examined my body from a detached third eye view -- trying to find the most believable explanation for my bouts of tachycardia, pain, and cognitive torpor. And there were easy culprits.
After my initial diagnosis of stage 4 endometriosis after surgery & then my diagnosis of ME/CFS in fall 2007, I had to take a quarter off from Stanford. After said quarter, I developed bad habits & I could blame symptoms on my off and on alcohol abuse (though that was not exactly new) and a .5 mg of prescribed ativan per day, which I believe rendered me an enormous addict even though doctors -- including addiction doctors -- told me, physically speaking, I was not. I lied about this to myself as much to others. At some point, I exaggerated my benzo usage in order to create a comprehensible truth that could explain the inexplicable symptoms and bouts of illness that repeatedly waylaid my life. To be fair, it wasn't really lying because I BELIEVED it; every other explanation wasn't comprehensible to me. I dismissed specialists who diagnosed me with POTS or ME/CFS because the vast majority of doctors dismissed them. It had to be completely my fault because if it was my fault, I had some level of control. There was something I could DO if it was my fault. I believed in the disabling effects of my bad habits so completely that, even when I had crippling pain, tachycardia and slurred speech after living like Mormon for months, I reasoned it was some weird withdrawal symptom that had just manifested -- a BELATED withdrawal symptom from a drug that doctors said I'd never been physically addicted to. I did in fact believe that. It was a religion. It was my explanation for everything.
That being said, I really was a periodic binge drinker during my twenties and this probably didn't help my health, especially when you add a dash of ativan. (It wasn't a daily affair but it was often quite out of hand....It got ugly.) Broadly speaking, when you're enigmatically sick and are often dismissed, being fucked up (an off and on binge drinker) and having unrelated health issues are not mutually exclusive. The generic doctor might believe them to be mutually exclusive but they are not. Beguiling and disabling symptoms that plague you drive self-doubt & self loathing and ultimately may help lead you to substances. That being said, my off and on binge drinking was a genetic inheritance and I probably would have drank too much during my twenties no matter what. But, had I not been sick, I'm fairly certain I would have been a functional substance abuser. I suppose that's not an excuse...
But yes, while I did talk constantly about my drinking problems and eventually the benzos, I never talked about the quarter I had to take off from Stanford senior year because I felt I could barely walk up the stairs. (Said bout of illness predated my benzo "addiction") I never talked about my Postural Orthostatic Tachycardia diagnosis in 2011 or other similarly not well understood diagnoses. I knew people would not take THAT seriously. When I felt sick & I was not engaging in bad habits, I did not discuss it because I knew it would be dismissed. My medical issues were too nebulous at that point -- pain, fatigue, torpor -- and, whenever I''d vaguely discussed them, I'd always been cast the hypochondriac. So I cast myself in that role as well. I didn't want to deal with the ridicule so I convinced myself that it was either all in my head or a result of substance abuse. I became so accustomed to dismissing my body that I dismissed it even when the problems became incredibly concrete and tangible. In the summer of 2013 I lost twenty lbs in under a month. I was in horrific back pain and had a slew of abnormal neurological exams. They thought cancer (rapid weight loss/back pain) and then MS (neuro exams) and after they tested for those & the usual suspects & came up with nothing, I reasoned that it was nothing. I mentioned it vaguely to my closest friends in NYC; they assumed I'd had some gastrointestinal bug....
In short, the truth behind my illness was not comprehensible or convincing and, when it was, I'd become so inured to my body's complaints that I ignored them. I reasoned that my body's problems probably had obvious causations. But sometimes the most likely suspects have nothing to do with anything. When I basically got rid of the bad habits and all the scapegoats, that's when diseased zebra teleported into my life again. And this time he was so fucking enormous that nobody could deny I was sick. And that's how far gone I had become in order to acknowledge the reality of my illness. Because of clouding diagnostic factors and bad habits coupled with crippling self doubt, I needed EVERYONE -- and I mean EVERYONE (I felt like death, I looked like death, my vitals were all over the place, my illness was extremely visible) to believe I was sick before I could believe it.... I needed everyone, not just rarefied specialists but quite literally everyone, to validate my illness before I could validate it myself.
And, ironically, I eventually had to get BACK ON the goddamn benzos for neurological problems. If I don't take them half of my face spasms violently amongst other things that I won't get into. The doctors demanded it...
All this being said, I dream every day that I'll be healthy enough for most people to question whether I'm really sick. That is my ultimate goal. Ramble over...
Note: my brother is the one person in my personal life who never dismissed me. He always said I'd developed serious health problems that I needed to acknowledge/explore & that substance abuse wasn't THE piece of the puzzle... I wish I had been able to hear that. Or I wish that I'd taken Dr. Montoya's diagnosis of ME/CFS in 2007 seriously or my diagnosis of POTS in 2011 seriously & not listened to the myriad of generic internists who said that my problem was simply my lifestyle & everything else was hogwash. I suppose I only have myself to blame in a way. But, there it is.