Breaking the Anxiety Cycle: My Journey Through OCD
Below, B. shares their treatment journey through anxiety, substance use, OCD, and back again. Join us as B. shares his story of recovery and messages of hope as part of the 2021 OCD awareness week.
Anxiety is certainly not something that has been foreign to me throughout my life. When I was in fourth grade I started to have panic attacks. At that time the topic which they centered around, strangely enough, was the weather. Specifically, if the clouds got dark and it started to get windy outside my thoughts would spiral into convincing myself that a tornado was imminent and that I had to escape to safety. I would pace the halls, opening and closing the blinds, often working myself up to the point of vomiting. It got bad enough that I would occasionally have to leave school and my parents brought me to a psychologist when they realized that what I was ill with was not a physical sickness. Looking back on it now, I actually don’t even remember what we talked about in those sessions but whatever we did seemed to work as my panic attacks disappeared. Little did I know that the psychologist had shared with my parents that later in life the panic could return during times of increased stress. It turned out that not only was he right about that but that the panic I would experience would become so intense and persistent that I would eventually develop full blown agoraphobia and eventually OCD as well.
In my mid-twenties, following an extended period of drug and alcohol abuse in the years following my graduation from college when I was directionless and stuck in a job that I hated and which brought on a whole lot of stress. My panic attacks returned with a roaring vengeance. The first panic attack I experienced as an adult shook me to my core. I had been playing video games with my roommate late at night and probably on two or three nights of no sleep following an Adderall binge when I suddenly felt something like a bolt of electrical current that started in my spine and went up through my neck and the back of my head. I went into the bathroom and started shaking while looking at myself in the mirror and holding onto the sink. I actually thought that I was going to die. Although I didn’t call 911 that night, the next night when the thoughts of imminent death returned I did end up going to the emergency room where the doctors ran tests on me and concluded that what I was experiencing were panic attacks. I would soon become very familiar with the fluorescent lights of the hospital as this kickstarted a time when I was averaging an ER visit roughly once a week (the staff at the three local hospitals knew me by name and face). For anyone who has experienced a panic attack before you are likely fully aware of why exactly I felt that I needed to seek emergency medical care so frequently. But for those who haven’t, even though every cat scan and EKG and blood test would come back normal time after time, my altered thought process would convince me that THIS time…what I was experiencing right now…was the time that all of my unhealthy lifestyle choices had come back to result in a sudden stroke or heart attack as my mind convinced me that I had done some sort of permanent damage to my heart or my brain. It didn’t help that the symptoms of my anxiety attacks such as tunnel vision and rapid breathing felt so much like what I imagined an actual medical emergency to feel like.
Driving on the highway was the first context for when these
panic attacks would surface consistently. I would be unable to drive on the
highway (with all of the fast-moving visual stimuli that comes along with it)
without that sense of imminent death and foreboding danger becoming so powerful
that I would rush to pullover as quickly as I safely could, often on the side
of a major interstate highway. One time I had such a sensation of pins and
needles throughout my arms that I didn’t think I could lift my hands to the
steering wheel. This soon extended to not only just highways but driving in general
as I could no longer even take back roads while avoiding the
highway without feeling strong racing thoughts as well as physical symptoms of panic. Soon I became unable to function at work and I bounced around from job to job without being able to handle the responsibilities of a full or even a part time job. This progressed to the point that I became unable to even leave my home. For about seven years I struggled with agoraphobia to the point that I only left home to take cabs or Ubers to appointments with my rotating list of doctors, psychiatrists, therapists, nurse practitioners and other various medical and mental health professionals. Any time I was in public my mind would be stuck on high alert in fight or flight with an overwhelming sense of danger to the point that I just stopped trying to deal with it anymore and completely lost my quality of life. I didn’t see friends or family outside of my parents and my brother who lived in the same house. My anxiety got so all consuming that I couldn’t even watch TV, movies or sports anymore, which I’ve had a lifelong passion for. I spent my days listening to podcasts and getting lost in the online world of the forums and Facebook groups. Some days I would literally sit on my porch for hours and throw a tennis ball off the wall. It was during this time that I also became unwittingly addicted to benzodiazepines. I was given Ativan during that first trip to the ER and had been given refills by my PCP at the time without any warning about how addictive they are or how difficult they were to come off. As I bounced around from prescriber to prescriber I would go on from Ativan to Xanax and eventually Klonopin (with some Valium thrown in as well) which would be something that dominated the better part of a decade of my mid-twenties and early thirties as I lost trust in medical professionals and fell deep into the world of the “online benzo community” that could best be described as cult like and dominated by fear mongering and the false information of medical and mental health advice being doled out by laypeople (many of whom were sick and suffering and stuck in similar situations themselves, often for years).
So although I was very familiar with anxiety and panic to
say the least, in terms of OCD, I have to admit that I was almost entirely
ignorant. I thought of OCD in the stereotypical ways that it is often depicted
in popular media such as obsessive hand washing or counting tiles. It was not until
I got low on my self-directed taper off of my prescribed Klonopin that I began
to have disturbing thoughts. They would be about taboo subjects like sex and
violence mostly about my parents and those close to me. Being a pro at Dr.
Google of course I started to do research into this and quickly found various
videos on YouTube about something known as “Pure O”. What I heard from the
speakers in these videos seemed to resonate strongly with what I was experiencing
but because of various sites that I was frequenting for my support and advice
on tapering off the benzos, the intrusive thoughts were normalized as something
that was a normal process for many in benzo withdrawal and/or experiencing
“benzo withdrawal syndrome” (a term often used by those in the online layperson
benzo community for people who have gone through the acute phase of withdrawal
but still experienced lingering mental or physical symptoms) for many people
and something that would “heal” if I “gave it time” (I was also told that doing
a slow, years long taper would result in being able to jump off at the end with
few symptoms and to avoid a protracted withdrawal experience that I witnessed
others up to ten years off the meds who claimed to still be suffering from. I
met people who took upwards of a decade to taper off of benzos and other
psychiatric medications). I was told by a prominent figure in the community who
has coached hundreds of people going through benzo withdrawal and published a book
on the subject which I read early on in my journey that these thoughts
were just my “benzo brain” telling me lies and trying to heal back to homeostasis. Also that these mental symptoms were to be treated the same as physical symptoms and that all of this would heal if I just waited it out and gave it more time. “If it wasn’t there before I went through benzo tolerance and withdrawal then it wasn’t ‘real’ and it would ‘heal’.”.
These forums and social media groups as well as the private “peer support” group that I had joined which was run for profit by that aforementioned proposed benzo expert in dealing with the withdrawal process from benzos also had an extremely anti-psychiatry core message so I trudged onward with my taper for a total of four years (following the advice of people on online support forums as well as instructional YouTube videos I first dissolved my Klonopin pills into a solution of milk and removed mL’s each day until I became so sick that I reinstated on my initial dose and again following the lead of those same sources bought a jewel scale and used a razor and nail file to do a “dry cut daily microtaper” shaved off particles of dust each day until I progressively got lower and lower on my dose and eventually got all the way off the drug) without any real life support aside from my close family. I was advised by my peers in the support group to just keep using the prescribers to get my pills and complete my taper the “right way” since all the doctors were clueless about benzos and what they could do to a person’s mind and body if they didn’t taper off extremely slowly. The support I did get came from other people struggling with active benzo withdrawal or in the protracted and/or the so called benzo withdrawal syndrome phase of their “healing”. I also was in contact with a few people who had “healed” for hope that one day I would be healed too.
It should be said that even though I was taking an addictive, controlled substance every single day that I could not physically or mentally stop taking, I was in complete denial to the fact that I had an addiction problem. It was reiterated to me over and over again from these online peer support groups that what I had was a “tolerance” that was medically prescribed and that any issues that I did not have prior to withdrawal would heal over time. Well, I didn’t have intrusive thoughts or other OCD symptoms before I got very low on my Klonopin taper but they certainly reared their ugly head then. Any insinuation that this was addiction was met with a lot of hostility and attempts to prove that it was different from addiction as it was given by a doctor and not abused or bought off the street. Anytime I was sent to any sort of facility after going to the ER I had the completely misguided attitude that I didn’t belong with the alcoholics and the heroin addicts. I was different (I now know that it does not matter what a person’s drug of choice is or how they got to where they are. What matters is how we get up. We’re in an opioid epidemic in which many people were prescribed opiates as painkillers and eventually wound up turning to heroin. I see this as no different to what happened to me and the others from the online community with benzos. We may be “accidental addicts” but we are addicts nonetheless in my opinion).
Eventually I entered into an acute withdrawal stage (in my
home since I was told to stay out of detox as they “did not understand benzo
withdrawal”). Since I was not on any other adjunct medication I began to have
the worst panic attacks I had ever experienced. I would have to get on the
floor on my stomach and breathe for upwards of an hour. One time my hands got
stiff in a rigor mortis way and I saw white light as I screamed for my mom to call
911. I also was having
CONSTANT 24/7 intrusive thoughts. It seemed like everything and anything I turned my attention to was met with a thought that went in direct opposition to my core values and who I considered myself to be. Watching a TV show with a child actor? My brain would offer up thoughts and imagery revolving around pedophilia. Trying to enjoy a show with an actor of color? It would conjure up the most awful racial slur over and over again which actually “sounded” loud inside my head. I was trying to break out of my agoraphobia at this time but when I would go for drives with my dad I would be thinking such things as “OPEN THE CAR DOOR AND JUMP OUT RIGHT NOW!” or “STEAL THAT COP’S GUN AND SHOOT HIM!”.
Even though I had seen a little bit about “Pure O” I was scared to tell anyone about these thoughts out of fear of being misunderstood and put in jail as a danger to the safety to myself and others. Even though I didn’t *want* to do these things and had no plan to (in fact the existence of these thoughts would often drive me to sob uncontrollably just wanting them to stop) I was afraid that I would be perceived incorrectly. This added to the fact that I was being reassured that these intrusive thoughts were a normal part of the withdrawal experience for many and would pass which led me to keep trudging onward through this mental torture.
Additionally, I also was experiencing constant remorseful thoughts that would torture me about virtually every single thing I’ve ever done wrong in my entire life to the point that I confessed my deepest darkest secrets to my parents and convinced me I was an irredeemable, awful person.
It wasn’t until one morning when I woke up (after little to
no sleep as I was still dealing with the acute withdrawal) to an onslaught of
incestual intrusive thoughts that I grabbed the razor that I had been using to shave
my pills and put it to my wrist. My mother tried her best to stop me and luckily
she was able to stop me from harming myself but clearly the anguish that I was
in had become too much. Frankly, I was completely spent. I finally surrendered
to whatever help was available even though in my confused and brainwashed state
I did not think that any professional medical help had anything to offer me (I
had heard many firsthand horror stories of people struggling with benzos that
had experienced horrific experiences in detoxes and rehabs and psych hospitals,
some of whom who came out even worse and even some who committed suicide). The
bottom line was that what I was doing, what I had believed for so long to be
right, was just not working. I had to try something else because I couldn’t
stand the suffering another day longer. I had nothing more to give on my own
with the support that I had been using up to that point. After a trip to the ER
that I will never forgot because of how STRONG the intrusive thoughts, images and
urges were I had a ten day stay at a dual diagnosis detox where I asked the attending
psychiatrist if I had OCD but was told he was not ready to make that diagnosis yet
and was subsequently put on and off several heavy duty antipsychotics and other
psych meds. This culminated in a confession one night that I was going to slam
my head off the concrete wall of my room due to the constant stream of
intrusive thoughts and images that I ended up being taken by ambulance to a
local hospital where I spent three arduous days in a holding area with several
other patients (and even asked the nurse at one point if I could be put in a
strait jacket out of fear that I would act on an impulse that I did not want to
do but felt like I could not control it as well as tearfully told the staff
with tears in my eyes that if I said or did something horrible that it wasn’t
really me). I was then transported to an inpatient psych facility and within
minutes of meeting the psych NP that I was assigned to was finally given
diagnoses: “Pure O” OCD, GAD, MDD, Panic Disorder with Agoraphobia and PTSD). Getting
properly
diagnosed and medicated put me on the right path for recovery. I wish I could say it was a smooth and linear ride from there, but it wasn’t. At one point during my stay in the psych hospital I was bawling my eyes out because I thought that I couldn’t be on benzos as I had no quality of life on them yet I couldn’t be off of them either as I was riddled with non stop torturous intrusive thoughts. I really, truly thought that I had no choice but to end my life even though I had fought so hard for so long to reclaim my life and again finally be able to see friends and work and go to Celtics games and concerts and date and do all the things that make life worth living.
I would go on to spend twenty-three days inpatient and then be in and out of various inpatient facilities (three more stays at inpatient psych hospitals), day programs, respites and community crisis stabilization centers over the next several months as the intrusive thoughts, the generalized anxiety and the depression remained quite bad. Things really started to improve when I got on the proper medication at the proper dose (what really stabilized me and gave me immense relief from symptoms was getting on a max dose of Zoloft as well as Gabapentin and eventually Latuda) and took part in an intensive ten week OCD specific IOP at McLean hospital that included groups, several hours of ERP therapy every day and meeting with a family therapist in addition to one on one therapy with an OCD specialist. I feel incredibly fortunate to be able to have had access to this program and to the therapists that I still see today (my talk therapist Drew and my OCD therapist Carol). I also joined an AA fellowship through the connection of a childhood friend at a group that meets a stone’s throw from my house. I have built such an amazingly strong support system and I am thrilled to not only be employed for the first time in nearly a decade but to be doing really meaningful work as a teacher’s assistant at a school for physically and mentally disabled students as well as a one-on-one skills trainer for one of the students from my school and a home health aide/companion to a family friend who suffers from dementia and Parkinson’s. I am seeing friends at every chance that I can and I recently was able to go on vacation to the Cape and Maine and out to a Celtics Playoff game. I jump at the chance to hang out with friends at every opportunity that I can. I feel like I’m not only a part of my family and group of friends and even my community again but as an asset and valuable contributor to them. My life is good and compared to where I was a year ago it is an absolute world of a difference and has been labeled by my sponsor as “miraculous”. I don’t have panic attacks anymore, I don’t wake up vomiting in the morning anymore and dealing with day long, unprompted physiological anxiety anymore. I am comfortable in my mind and my body and I’m able to do things I never thought I would have been able to do not just during my period of intense struggling but ever before in my life.
I was reluctant to publish this article out of fear of being
misjudged and misunderstood both in terms of how I would be perceived for being
forthright about the nature of the intrusive thoughts I experienced as well as
how I could have been in such denial about my addiction and mental illness when
it was so obvious to many of those closest to me and how this piece would be perceived
by those I used to consider friends from the online benzo groups where I have already
been vilified and called a “horrible person” for publicly confronting the
misguided advice spread by the prominent figurehead who offers support to those
who have turned their backs on professional medical care. I have only opened up
to a handful of close friends and family
members about what it REALLY means to me to experience OCD. But I think that it is very important to spread awareness and to remove stigma. Which is difficult for OCD seeing as how the content of the intrusive thoughts preys on so many topics which are extremely stigmatized. I feel an obligation to help others. I still log into the forums I used to frequent and see dozens of people posting about dealing with intrusive thoughts yet being met with the same misinformation that I was. A shocking number of them end up committing suicide as they try to piece together a way to “heal” and get relief from their symptoms without relying on professional psychiatrists and therapists and other mental health professionals. I want to help these people understand that yes, what they have sounds like OCD and it is terrifying, but it is highly treatable and there is professional medical help and most of all don’t sit around in agony listening to those laypeople who you met online that are telling you that it will go away on its own with time. The core message of “time being the only healer” in these instances is just patently false. Recovery for anyone dealing with physical and mental substance addiction and/or underlying or newly emerging mental illness requires a lot of hard work. Acceptance has been key to my journey. I believe my true “healing” and road to actual recovery began that first day at the psych hospital that I was told by a person with decades of experience in treating OCD that without a doubt I was experiencing OCD. I’ve seen many in the online community who dismissed official diagnosis of anxiety and depression and OCD and bi-polar as not being “true” versions of those illnesses as they were caused by benzos or other psych meds and didn’t emerge until becoming tolerant to or off these drugs. Well, it doesn’t matter whether they are underlying or emerging as a result of prolonged drug use, what matters is that it is happening now and there is help out there so that we don’t have to suffer the way we have been. Sometimes trying to do it on our own just isn’t enough. I tried so many alternative and natural healing techniques from yoga to EFT tapping, to mindfulness meditation to deep breathing and on and on and…ultimately it was getting on the right medication at the right doses and lots and lots of therapy and spiritual work in AA and life in general that not only gave me my life back but allowed me to thrive in ways I wouldn’t have thought possible.
I’ve been told by some that I “got lucky” that I’m doing so well just a year and a half off of benzos. I don’t think luck had anything to do with it. To dismiss it in that way is so insulting not only to the inhumane and in my opinion avoidable suffering that I endured (at least to the degree that it ended up being, a good deal of it was inevitable) but to the months and months of hard work I did. I went through absolute hell and I emerged from it determined to get the right help.
Several meds did not work. I did not fit right with several
therapists and prescribers. I didn’t turn my back on the entire medical and
mental health fields, I kept searching for the right fit for my needs. It’s
entirely feasible that many people in the United States and across the world
dealing with benzo addiction and anxiety and OCD do not have access to the
quality of care that I eventually received but it wasn’t any accident or stroke
of luck that that’s where I ended up. I kept working and working. I got
extremely honest in therapy and in sharing in my AA group. I did not hold onto the
resentments against the doctors that got me unwittingly addicted or even to the
people from the online benzo community who I believe had taken years from my
life that I’ll never get back. I didn’t stay stuck in misery and anger for years
and years because I put in the
work to reclaim a good life. If I had stayed stuck in that same place listening to this same echo chamber of blame and misinformation I don’t know where I would be today but in all likelihood it would be either dead or institutionalized. I’m so grateful and thankful for the people in my life who have become my support system. I recently had a friend from my AA group come up to me after a meeting and tell me that I have made the most amazing change that he has ever seen from the person I am now to who I was, riddled by untreated OCD/GAD/panic disorder/major depression and unsure if I even was an addict or not when I first entered the halls just a little over a year ago. The message that I want to convey to anyone struggling with mental health problems and/or addiction, whether these problems arose as a result of dealing with mental illness or emerged in the wake of being off of them, is that it absolutely can and does get better. I’m living proof of that. It takes a lot of hard, proactive work but it is absolutely doable and absolutely worth it.
~B.