Where's the Poop, Robin?
Where My Healing Was Hiding
Part 3: How I Met Your Lyme Disease
Trigger Warning: This series discusses controversial and critical views of Chronic Lyme disease, chronic illness, mental illness, trauma, health, medicine, religion, politics, and just about everything. It is intended to express my personal perspective, for exploring the many facets of physical and mental well-being that I found conducive to healing. Some ideas may cause discomfort if one has not experienced a similar stage in their journey, and/or one has not found the resources to understand them in their intended context. I explore paradigms that I myself at one time considered offensive, but in my healing journey have found the capacity to inquire and even embrace. I am not a medical professional and this is not medical advice. Please engage with these thoughts only relative to your individual capacity to receive them, and allow yourself safe distance if you find them overwhelming. Personally, I believe our triggers are our greatest teachers if we learn to converse with them gently, but one must first come to a place of internal safety.
This is Part 3. In Part 1, I highlighted the role the sympathetic nervous system plays in weakened immunity and susceptibility to chronic illness, when dysregulated by chronic fear and stress. In Part 2, I explored layers of chronic illness that are so much more than tick-borne pathogens, and discovered the power of the mind in getting the body stuck in a chronically diseased state. How deep does this go? Is Chronic Lyme just the tip of a much bigger iceberg (the "poop")?
I got Lyme Disease after a brutal 9 months of antidepressant withdrawal.
Since age 14, I’d been diagnosed with Major Depressive Disorder, a “hereditary chemical imbalance,” I was told. Being on antidepressants long-term is extremely difficult. I allegedly had that “treatment-resistant” type of depression, in which I would feel good for 6-9 months on a medication, then my doctor would have to regularly increase the dose because it lost effectiveness. Eventually I’d reach the highest legal dose available from a PCP (as much as is “legal” for a drug not even approved for children under 18… I was 14, mind you, the age group at which SSRI’s are known to increase risk of suicidal thoughts and behaviors). When I maxed out and still fell into melancholy moods and irritability, we would begin the process of “changing my meds” - weaning off the old prescription while titrating up the new one.
Besides varying side effects of SSRI’s and SNRI’s like rapid weight gain, insomnia, drowsiness, nausea, loss of libido and anorgasmia, there is also an entire host of withdrawal effects upon discontinuation, including suicidal thoughts, mood swings, vertigo, nausea, akathisia, anxiety, and all kinds of fun things to experience as a high school student, college drop-out, or newlywed. So every 6-12 months for 11 years, I experienced a roller coaster of happy-pill elation, and deep valleys of confusion, illness, mood swings, judgment, punishment, and shame (because being a moody teenager is somehow something good Christian girls avoid on the journey from 12 to 20). My 19th year, when I dropped out of college, lost all my friends, was no longer covered by health insurance, and medication cost $200 a month, my doctor and I decided to try a different route experimenting with various cheaper anti-seizure prescriptions (!) and “Christian counseling”; I spent most of that year lying in bed sobbing and plotting ways to die without having to kill myself. As I felt my head separate from my body and float above my pillow, I prayed that maybe the rest of it would just follow up to heaven and I’d never wake up again.
But I loved my Zoloft (et. al.) When I finally got insurance and could afford the medication, and go back on the “necessary drugs,” I got my life back. All the pain would disappear, and it was worth hitting the snooze button for 2 hours every morning, lying awake til 3 am, and breaking out the fat pants, just to be me again. To be the artist, the musician, the singer, the actress, the traveler, the good Christian girl, to be fun and vibrant and stubborn and mischievous, head bang at concerts, work out at the gym, complete my assignments, to work 3 jobs, earn paychecks, get insurance, to volunteer for good causes… yes, I had this incurable hereditary chemical imbalance, but thank God for pharmaceuticals, because I was just worthless without them! Side effects be damned, virgins don’t need libidos, fat is beautiful, and as long as you only curse out your boss once, you can keep your job and health insurance, and all the drugs are cheap! Anyone who pointed to studies that they were no better than placebo, were dangerous, or implied drugging your mind was sinful, just didn’t get it. Tom Cruise in 2005 was Archnemesis Number One. Antidepressants saved my life. It was only trying to quit that plunged me into the darkest places. The doctors said my "relapses" were proof I couldn't quit. So of course… I couldn’t quit.
Until I did.
Eventually I maxed out at 300mg of venlafaxine and frequent lorazepam, was still having break-through anxiety attacks, and when I moved back to the US, I decided I wanted off the medication roller coaster for good. A newlywed with non-functioning genitalia was the last straw. Also, my new husband was the only person in my world who actually supported and encouraged me to change, because, as I said, this "chemical imbalance" was "hereditary," and everyone else "knew" I couldn't change.
Unfortunately, in 2015, there was still heavy denial and/or lack of knowledge in the medical community about “discontinuation syndrome.” The doctors were still believing the lie of the pharmaceutical reps that withdrawal side effects could be mitigated by a slow tapering of the dose over a few weeks. As I devolved into a mess of suicidal vertigo, nausea, akathisia, incessant crying, and rage, my doctors, psychiatrists, and counselors all looked at me said, “I’ve never heard of that happening as long as you taper.” As if I hadn’t experienced it my entire life. (Come to think of it, of course they haven't seen it because none of them are brave enough to walk their patients through it; all of my doctors for 20 years encouraged me to get back on drugs because they were afraid of being held liable for my suicide. I was truly on my own with the biggest health scare of my life.) One weaned me onto bupropion, because it would help control the withdrawal and had “less side effects.” I still had to down pepto-bismol, dramamine, lorazepam, fish oil, and God-knows-what-else just to get out of bed without falling over or wanting to throw up. Most days I just stayed in bed, crushed with guilt that I couldn’t pull my weight and pay off my student loan. The final taper of venlafaxine – in which I opened capsules and counted out individual beads, to remove only a few every week or so – took 9 months. And it was horrific. You can do an internet search of antidepressant withdrawal and find not just countless victim stories and forums, but national headlines and medical publications. Let me spare myself the traumatic details, and summarize by saying my life was hell. My marriage was hell. My American Dream was hell. My body was hell. My mind was hell. In fact, include the word “hell” in your search to generate the most accurate results.
That’s some serious shit, Robin.
In Spring of 2016, with support from a naturopath, I started to see the faint glimmer of a new life blooming as I was beginning to stabilize. I was assured that bupropion was an easier taper. I’d found a therapist who taught me some CBT and tapping techniques, and even started volunteering – though sporadically as my nausea and vertigo were still frequent – at a local art museum. I had my foot in the door of my dream job. I could see the end of the nightmare.
Memorial Day weekend, I was playing the piano in church, when suddenly my arms felt like they weighed a ton, and I could barely lift them off the keys. I finished my song, and headed back to my pew with the strangest feeling of heaviness dragging on my body. What on earth was this? We had a picnic that afternoon, and I parked myself in a lounge chair and didn’t get up. I was exhausted. When work resumed, I wasn’t any better. I worked in the stock room, and lifting and carrying boxes was my job. I could barely cross the room with the lightest cases. Tossing empty boxes overhead into the compactor was like trying to do jumping jacks underwater. I hoped I was just unusually sore from swimming last weekend, but the weakness didn’t subside.
My precious progress was suddenly gone, as I regressed into a nauseated, sluggish, exhausted mess. A few weeks later, I had horrible vertigo and barely drove myself to the doctor to be diagnosed with inflammation and fluid in the ear. I declined steroids, and cleared it up slowly with a powerful turmeric supplement. But the random symptoms kept coming. Sheer exhaustion. I was eating healthier than ever, but having nausea and stomachaches. Muscle aches and fatigue cut my gym workouts very short, once a week. Yet despite the vegetables, working on my feet, and running the treadmill, I weighed in 10 lbs heavier and noticed rolls of fat bulking out my back. Buzzing and crawling sensations emerged, along with shortness of breath and panic attacks.
I remember a desperate internet search along the lines of “what the hell did these drugs do to me?!?” I was utterly devastated. I found a lot of sick people trying to get off antidepressants, most of whom were forced back on drugs just to survive. It seemed there was no one who made it out of this withdrawal after 16 years; hope gone, I plotted all the ways I could unleash hell itself onto the inventors of venlafaxine and every doctor who’d ever prescribed it... if I could actually get off the floor.
But I also found another diagnosis that kept popping up when searching for relief from my symptoms – Lyme Disease. Lyme Disease. I was living in my home state of Pennsylvania at the time, so it was a reasonable inquiry. I was particularly aroused by the presence of three little harbingers that season: during a woodland getaway in April, I’d found a tick crawling on my chest one morning. I hadn’t seen one of those since my childhood head checks. I shuddered and tossed it in the toilet. But about a month later, right after my new symptoms started, as my husband attended my bedside, he leaned over and picked a tick off the floor. A week after that, I was tossing and turning while crashing at my parents’, when I saw another tick crawling on my pillow. I didn’t sleep that night.
Three ticks in 6 weeks, miles of woodland expeditions, and symptoms consistent with Lyme Disease. My naturopath had seemed puzzled that my withdrawal was extending so long, but chalked it up to needing so much detox after 16 years. I asked her if she thought I should look into Lyme Disease, to which she replied, “I don’t think so, but it can’t hurt.”
And here I tell you why I still believe in God, friends: a personal friend of the family was a Lyme-literate doctor. who. took. insurance. (insert collective gasp from the Lyme community)
My diagnosis story is probably the most quick and easy you’ll hear from any Chronic Lymie: once I suspected Lyme disease, I got an appointment, was ordered a proper iGenex test, and put on antibiotic combinations immediately… and that process still took 5 months from my first “symptoms.”
The rest, as they say, is history.
The first year in Lyme Land was a total nightmare of panic and undiagnosed co-infections. I still have traumatic flashbacks just breathing some days, thanks to Babesia's infamous air hunger. But all in all, I was thrilled to get a Lyme diagnosis. Something with a name. Something with a protocol. Something with a great documentary. Something with success stories, though they seemed so few and far between the longer the illness drags on. Lyme is hell, and I’ve been writing about that utter pain and devastation for 6 years.
But I once blurted out a shocking truth in my support group that would take a few more years for me to even grasp myself: in all its trauma, controversy, scientific war zone, isolation, pain, horror, gaslighting, ignorance, hopelessness, and hell… I would rather have Lyme Disease for the rest of my life than ever experience antidepressant withdrawal again.
Lyme is a living hell, make no mistake. I’ve recounted here many times the things it stole from me and the ruined ash heaps left in its wake.
But Lyme has warriors. Lyme has non-profit foundations. Lyme has concerts, and support groups, and 5K’s, and t-shirts, and doctors, and research, and funding, and a working group in Washington, and celebrities, and books, and protocols, and be they ever so controversial and traumatized, Lyme has a community, dressed in bright green, with voices breaking out of darkened bedrooms and hospitals all over social media, and many are drop-dead gorgeous because we “don’t look sick,” but maybe we can at least get some attention. I know… it’s not enough. The funding is dismally low, the cases are rising, the research isn’t enlightening us fast enough, the cost of treatment is criminal, and we are still an under-served and ostracized population.
But I wanted to stay there and attribute everything to Lyme rather than look at the massive pile of shit that was my life right before the tick bite.
Just thinking about the Withdrawal Year filled me with such panic, nausea, and rage, I would have let all the pain and any psychosomatic trauma fester forever, as long as I could call it Lyme instead. I’m two years clean off all pharmaceuticals. My first year off emotion-numbing drugs was 2020, of all years. I wanted to clean them out of my system, out of my mind, and out of my life forever. I sure hated Lyme, but I loved being a Lyme warrior.
In contrast, I can’t even pull up the links here about antidepressant withdrawal without feeling the weight of all hell bearing down on me. No. That’s a place I cannot go. Those are people I cannot look at anymore. That’s a ME I cannot look at anymore. And that’s precisely why my brain still needs the fog: to hide what I cannot bare to recall. My own life.
And then the documentary was released.
“Medicating Normal” is the “Under Our Skin” of antidepressant withdrawal. I saw the trailer one day and wept.
There’s the poop, Robin.
This thing that I managed to bury under Lyme Disease for 5 years came out. My story came out. I was actually really happy at first, because I thought that the existence of a documentary and website full of resources that I'd never had meant that I was off the hook – all I had to do was share a link, and feel like I helped anyone and everyone who ever had SSRI problems; I was free to move on with my healing without ever going back to that world. But of course, I couldn’t share anything without vetting it first. I had to take a peek into the community and make sure they were sending a message I could get behind.
It was a mirror I couldn’t stand to look into. Where Lyme struggles with funding, research, advocacy, and awareness in the medical field, it’s a shining light compared to the black abyss of psychiatric pharmaceutical harm. While Lyme patients struggle to convince doctors that they’re sick, the psychiatric patient swings violently from trying to convince doctors that they’re not sick, but literally dying of the treatment, and dying trying to get off of treatment. All the same gaslighting and ignorance of Lyme is there, but with the caveat that it literally is all in your head, and your doctor is the one who put it there. (Unless, of course, it’s a spirochete that the doctors don’t believe in either!)
And worse, whereas advocating for Lyme means showing support and upholding the dignity of the community, advocating for the truth about antidepressants comes across as stigmatizing and shaming upwards of 77 million people who depend on them for mental health conditions. Long-term psychiatric drugs are a lose-lose-lose community. Damned if you do, damned if you don’t, damned if you try to change. Browse the comments of any social post about psychiatric medication. It’s where the poop goes to eat, sleep, and breathe more poop, Robin. The trauma in this community is unbearable.
No, my brain wouldn’t open up for that. The dissociation needed to stay. My protective mechanisms could not let their guard down for such a hideous conundrum: tell my true story and offend some 20% of the population, most of my social circle dependent on medication, and my own inner child, so so happy for Zoloft, or keep my mouth shut and pretend Lyme is the whole story, the be-all, end-all of my health journey... and not heal, because I know I’m still infected with a lie.
I first published a version of this post 6 months before it appeared on my website, and I had a relapse of symptoms and panic attacks that weekend. My body doesn't lie. I wasn't ready, no matter how badly I wanted to move on. You can't rush trauma. Circling back to Part 1, going too quickly only puts one back in "fight-or-flight" mode against their own skeletons breaking out of the closet... then the body stops healing. I had to shut them back up, go back to hibernating, dig deeper (compassionately) into my thoughts and emotions, and let myself rest as I nursed my terrorized self through her past.
But slowly, as I worked through my “easier” little-t traumas and learned more coping mechanisms, I began to gain a sense of safety, and the language to talk about my antidepressant journey. Slowly, I dipped my toe in that community, sharing some tips, trying to share some hope, but backing out as much as I needed to keep myself feeling safe. Largely I just acknowledged my own grief and pain, and validated my voice, despite the pain it may trigger in others. I’m not responsible for what others consume; I am responsible for what I let consume me. I need a place, even if it's just my mindset, where it's safe for all of us. The pain is deep. It’s complicated. It’s a hideous tangle of all the traumas of my life in a single knot in my chest. But it’s there. The anger. The tears. The shame. The lies. The betrayal. Those are the things that really need to go into remission. Those are the real story of my chronic illness.
Where’s the poop, Robin?
(“Dammit, Lily! You’re like a bomb-sniffing dog! Only with poop! You’re a poop-sniffing dog!”)
My god, there has to be more?
Yes, there’s a Part 4 to this chronic illness onion.