Ten weeks ago I went off my psych meds.
It was the question everyone asked. My husband, when I told him a week or so later. My team of therapists. My friends and family. The general public once I couldn’t keep it to myself anymore and wrote about it.
It wasn’t an easy decision to make. It had taken me the better part of a year to simmer and settle and swing and steady after a mental health episode so serious it landed me in the psych ward. It had only been eight months since I’d been called bipolar for the first time in almost twelve years.
I most certainly didn’t believe it. At least, I didn’t want to.
Did I go off my psych meds because I didn’t want to be bipolar? Maybe. Partially.
Did I go off my psych meds because I wanted to be sure I was bipolar? Sure. That sounds more right. But I could have tested that theory out at any time.
Why did I go off my psych meds ten weeks ago? Why, on my second day of a long-awaited vacation? Why, as I readied myself for bed at my dad’s house at the coast, in a room that holds significant meaning for myself and my family, did I leave that pill in the container and think No. I can’t. Not for one more day.
It was a letter I’d gotten the day previously. A letter from my old insurance company. Saying the pharmacy had mistakenly billed them for a prescription refill when they were no longer my carrier. It said I owed them $900 for a $30 refill I’d filled and consumed six months prior.
Why did I go off my psych meds? Because being on them made my family [more] financially unstable. Because how could I spend nearly a grand without knowing it, without having any conscious say or decision in the process? How could that possibly happen?!
Only in our current medical/mental health/prescription system. And “system” is a generous word because it actually works more like a rusty old grandfather clock: full of cogs, reliant on the steady swinging of a pendulum that I would liken to the free labor of the patient, filled with chasms, and regularly wound by the exorbitant sums of money changing hands between insurance companies, employers, patients and providers.
Maybe the grandfather clock is a lackluster analogy. Maybe it’s a generous one. After all, many clocks function quite well and I can’t say the same for this system.
I can’t tell you the heartache, the fear, the uncertainty, the twists and turns I’ve lived through trying to get the help I needed during times in my life I needed help. It often has cost me significantly more than I’ve gained. It’s cost me my security and stability. It’s cost me self-respect. It’s cost me privacy. It’s cost me hard won pieces of my sanity. It’s cost me, yes, money. And it’s kept me working more hours than I can always handle to ensure access to the services I so badly need.
I went off my psych meds because that option seemed less painful–and ultimately more hopeful–than staying on them. I went off my psych meds to protect my family. I went off my psych meds for a chance at freedom. I went off my psych meds with high hopes of a miraculous outcome, and with an intense determination to bootstrap it if I had to. I went off my psych meds in a split second decision that was a long time coming.
At first I was fine. Maybe a bit more irritable than normal. And then I began to fall. My concentration began to slip. My moods swung. I found myself arguing with my husband in an unusually fervent manner (and when I didn’t have a leg to stand on). Depression slipped into the cracks between the busyness that makes up my life. Four weeks later it was Labor Day weekend and I couldn’t get out of bed. We were camping and I could no longer make meals or tend my children or do much besides self-medicate and lay in bed and hate my life. Red flag. Red flag. Red flag.
I started taking those pills again. It seemed my only choice. It seemed the healthiest option. It was.
And so I got back on the roller coaster. I allowed myself to be reliant on a pill I couldn’t afford, that I wasn’t sure my insurance would cover. I let myself trust my prescriber who assured me she’d keep me on samples until we figured the insurance fiasco out. And when my insurance coverage came back that they’d cover only 50% of the $1000 price tag, I felt stuck. I felt taken. I felt really fucking grateful that I was on those pills and doing about a hundred times better so I could navigate these stupid, choppy, unnecessarily complex and hard as hell waters. So I was at least floating on them, rather than drowning within them.
I’m happy to report that I’ve weathered that storm and somehow my prescription is now $15 per month–thank you to the blessed drug rep who made that happen for me. I’m a lucky one. I have a good government job and good government insurance. I’m a social worker, so system navigation skills run in my blood. I’m white and I’m straight and I’m cisgendered and I’m able-bodied (if not able-minded). I’m middle class, or I used to be before the past year ravaged my family’s financial status. I carry immense privilege in this world and that provides me access and empathy that others may not get. I’m one of the lucky ones. If it’s this hard for the luckiest, what must this system be doing to the uninsured or underinsured? What about black women or trans folk? What about the uneducated or those that carry the dreaded “borderline” diagnosis?
There’s so much to discriminate against, so many reasons to blame the patient. Especially when we go off our meds (against medical advice). Especially when we exercise our right to choice in this life. Especially when that “choice” only further confirms our diagnosis. Especially when you can’t see, or imagine, the reality of all we are dealing with. Especially when we can’t explain. When the words stall and the transparency stops and the secrets seep into the relationship.
You think you can’t trust us.
But trust this: we are doing out best.
This shit is hard. It hurts and it confuses and it alienates and it scars. When life hurts, hard choices become necessary. Meds or no meds is a constant battle, with no clear winner. Just a daily toss-up of often shitty outcomes to choose from. And please remember, I’m one of the lucky ones.