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FYI: This is pretty much one of my dissertation chapters, but it actually started life as an intended blog post story (and has been patiently waiting to actually get posted). This is also the story that made me realize I could write my dissertation in this storytelling style and get way more writing done much faster by writing in my own voice instead of trying to use the standard academic voice. #NeuroGradHacks
I nearly cried in the Costco pharmacy this week.
There’s a certain threshold of stress—of pain, frustration, desperation—that when you hit it, your body can’t do anything but express it then and there—even if it means you’re having an emotional breakdown in a very public place such as, say, the Costco pharmacy counter. Sometimes it’s out of nowhere and all at once, like hearing the results of a Supreme Court decision that will destroy lives or news of a loved one’s death. Other times, it’s a slow, gradual build over time, with lots of little things adding up until you hit the limit of what you can handle. This case was the latter—a breakdown that had been building for weeks.
You see, I have ADHD. I also have Seasonal Affective Disorder, and probably some good old fashioned depression to boot. My brain can’t produce, or can’t correctly process, important neurotransmitter chemicals that neurotypical, “healthy” or “normal” brains utilize to regulate attention, emotion, executive function, and basically all the important stuff brains do—which is a lot. Since I can’t make natural brain chemicals, I rely on store-bought ones, i.e. prescription medications. Because the brain and its chemicals are involved in, well, everything, it’s necessary for me to have these medications to function. Not only as a cog in the ableist, capitalist productivity machine, but as a straight up regular human being who needs to perform basic tasks like eating, sleeping, and hygiene to survive.
The problem is, there’s been a national shortage of ADHD medications for almost a year now. It started with Adderall—which is my usual prescription—and wound up affecting pretty much every stimulant medication available in pretty much every dosage. There’s a few factors that led to this—production delays, FDA regulations for manufacturing controlled substances, increases in the number of people being diagnosed with ADHD during and since the early pandemic, and a panic about stimulant abuse that the talking heads and politicians take to mean there’s a proliferation of fake diagnoses for addicts and the solution is to cut down and severely restrict access to stimulant prescriptions.
Thing is, studies have proven that stimulants are far and away the most effective treatment for ADHD (and other conditions like narcolepsy)—because again, the problem is brain chemicals, and all the behavioral therapy and planners and willpower in the world can’t change brain chemistry without using actual chemicals. (It’s also the case that people who need stimulant medication and can’t get them are more likely to turn to illegal stimulants and develop dangerous addictions.) So the result is thousands of people who desperately need those controlled substance stimulants to function—to keep their jobs, take care of their families, to take care of themselves—and they can’t get them.
I was lucky that the shortage was slow to hit South Carolina. It started in October, but I didn’t encounter an issue until February, when Adderall in my usual dosage was out of stock. It took nearly a week, but my doctor was able to send in a new prescription for the next highest dosage, which they had in stock, and I was able to tolerate the increase. A month later, I was in DC staying with family, and needed to refill my prescription.
“Why didn’t you get enough to last the whole trip?” you ask. Because of the whole “we must control the controlled substances and we don’t trust the patients not to sell their pills on the black market” thing, you have to get a new prescription—not a refill, but a brand new prescription—for stimulants Every. Single. Month. You have to meet with your doctor every three months to make sure you still need it (yes) and that it’s working properly (good enough). You also can’t get the next prescription filled until 2 days before the current one ends. You also also can’t transfer that prescription—if you need to get it filled at a different pharmacy, your doctor has to submit a brand new prescription to the new pharmacy. So that means if I have a trip, such as a conference, that is scheduled during the 2-day window I have to get my prescription filled, I’m screwed. And this happens Every. Single. Month. (And before you ask–because let me tell you, I researched every possible solution–you can’t cut stimulant pills in half: it ruins the time-delayed release and you just get all the stimulant all at once, so that’s a no go.)
Last September I was also in DC, unaware of the pending shortage crisis, and I was able to coordinate with my doctor to get my regular Adderall prescription submitted to the local Costco pharmacy with no issues. This February, with the new, increased dosage, she sent a prescription to the same DC pharmacy, and an hour later I got a call saying they're out of stock. So I called other area pharmacies, within a radius of a 2 hour drive from DC—no one had any Adderall available whatsoever. My doctor and I consulted, and she wrote me a prescription for a new drug, Concerta, in what she hoped would be an equivalent dosage. It’s a different kind of stimulant and chemical (meth-lite!) so the effects are different, and there’s no way to know how it will affect an individual without trial and error.
Got a phone call from Costco again—out of stock. Three pharmacies later I found a CVS that can fill it, and I immediately sent that information to my doctor.
I had been without medication for another week now. This was the second week within a month’s time that all of my progress on my dissertation ground to a halt. Without meds, I have serious fatigue, where I end up sleeping for 3-4 hours at a time multiple times throughout the day, and I’m lethargic in between. This leaves me about 3 hours of basic functionality in which to fit everything that needs doing, including feeding myself and showering alongside my TA commitments (that have imminent deadlines) and my dissertation work—oh, and emailing my doctor and calling a new set of pharmacies. Obviously that math doesn’t work, and thankfully my supervisor is understanding about my struggles and was fine with me not getting my usual amount of work done.
At this point, I was also supposed to be driving home in a few days time. It’s an 8 hour drive without stops (of which I need several for restrooms and food), and now that I’m older I don’t have the endurance for long road trips. So the plan was to drive 2 hours to Richmond VA, spend the night with a friend, and drive about 5 and a half hours the rest of the way home, which is plenty reasonable—if I have medications. Without them, I shouldn’t be operating vehicles bigger than a Hot Wheels car, so I was getting concerned about being able to get home.
The Concerta was a relief. I delayed my departure by a couple more days to give it time to take effect and make sure I didn’t experience any of the laundry list of serious side effects, which include sudden death, heart attacks, hearing voices, and (less relevant to me) prolonged erections lasting more than four hours, which as years of Viagra commercials have taught us, is when you need to call a doctor.
The first two days I was ecstatic. I felt great, I was awake and alert and focused, and I wasn’t experiencing the same crashes I get with Adderall. I did start to experience mild headaches, but during the delay in getting my ADHD meds filled I had also run out of Lexapro, which I take for depression, and I usually get a headache if I forget to take it, so I chalked it up to that. I expected to be able to easily fill it when I got home (with a 90 day supply! From an automatic refill! No doctor needed!). Day 3, I embarked to my friend Maggie’s house in Richmond and made it in a reasonable amount of time. We spent the afternoon together; I went to bed at an earlier time than usual feeling tired and wanting to get plenty of rest, but if I left by 9am the next morning I’d make it home in ample time to lead my 3pm reading group over Zoom from the comfort of my desktop.
I left at 9 am. I didn’t make it home until 11pm, fourteen hours later. For a five and a half hour trip. (I led my reading group from a Panera Bread in Durham NC from my cell phone propped up on a coffee mug, made it 20 minutes down the road, and had to stop again.)
Turns out, I was experiencing a lot of side effects, but because I had been cold turkey for a week, it took a couple days to hit. No erections or sudden death, but my heart was racing even when I was at a rest stop listening to guided breathing exercises to try and slow it. My headache was now a migraine, my right eyelid was twitching constantly, and my eyes felt like they had been dilated at the optometrist’s before I left Richmond. In short, it was a nightmare, and I had to keep stopping at rest stops to cover my eyes and try to sleep for an hour or two (mostly unsuccessfully) to be able to handle the next stretch.
So I messaged my doctor again, told her I didn’t feel comfortable taking that dosage of Concerta, but I was back in SC so hopefully there would be more availability of options. I had learned my lesson from DC, and called several pharmacies before I messaged her to check if anyone had Adderall. Nope. She sent in a different prescription for a much lower dosage of the same drug as Concerta—and I found out from Costco that they don’t have it in stock. I call around again, and ask if anyone has any kind of ADHD medication. Nada. Everyone is out, and the poor pharmacy techs sound tired of having to field the same question from every other desperate ADHD person in the state (and I’d still like to know why the patients who can’t be trusted with more than two days extra of medication are the ones having to cold call pharmacies to ask if they have any stimulants, pretty pretty please. No wonder we get cast as addicts).
My doctor and I went back and forth a few more rounds (over the course of a couple days, as she was responding to my messages in between other patients and only during working hours. Also, she’s in Chicago, because of my super restrictive grad school healthcare, so we’re not remotely in the same area), and we decided to try a prescription for a non-controlled substance that still has a small amount of stimulant, Wellbutrin, that I had taken without issue in the past for SAD.
During all this, I had called in my Lexapro refill on a Friday afternoon, and the automated phone bot assured me it would be ready by 6pm. That would be too late to take it, so I decided to pick it up the next morning. Saturday morning, I went to the counter, manned by the same tech who I’d already interacted with twice in the last week about ADHD medications, and gave her my name and date of birth to get my prescription. And then she told me they’re out of stock until the truck comes on Monday.
That’s when I hit the emotional threshold and tumbled over. I was in week three without ADHD meds that didn’t drive up my blood pressure and give me an eye twitch that lasted for days. I had a growing mountain of work I was behind on, including getting ready for workshops I had to lead later that week, and two conferences within the next month that I hadn’t been able to start preparing for, and I had well exceeded my limit for phone calls for the entire year.
Lucky for me, my brain needed a few moments to process that I had hit that threshold, and the distress in my eyes—and probably the way I instinctively physically recoiled as if I’d been smacked—had the blessed pharmacy tech immediately turn to the pharmacist to ask if they could give me a few pills to cover me until they could fill the rest of the prescription. Thank God he said yes, so I stepped to the side to wait for a few minutes until he could get to that.
And while I stood there, waiting for a precious three pills, I was fighting back tears, on a Sunday in a crowded Costco. I had been struggling through such an immense and unending amount of stress for weeks and I was past my limit. I was worried there would be no end in sight of the shortage. Would I be able to take medical leave from school? But if I couldn’t work on my dissertation or for my teaching center appointment, I definitely couldn’t manage a regular part time job if I was on leave, and I sure as shit can’t afford to live without income or to take out more student loans. I’ve been living with my parents since the pandemic, and they were getting tired of how I was unable to do more than the bare minimum of feeding myself and getting my dirty dishes in the sink before I had to go back to bed. When you hear that someone has ADHD, you don’t tend to think “debilitating chronic disability”. But that’s what it is, especially without access to the only treatment that makes it manageable.
I held back my tears, though I probably looked extra emotional and pathetic when I received my three pills from the tech, and I made it out to my car before I let them fall.
It’s been almost two weeks now that I’ve had the Wellbutrin prescription and life is much better. I still have a ton of work to catch up on, but I’ve made significant progress, and I’m not afraid of having to quit school and attempt to become an Etsy tycoon making jewelry out of LEGO. There’s also an end in sight to the shortage—the major manufacturers of Adderall and other ADHD meds are supposed to be caught up on production needs in the next month or so, according to the FDA’s website.
(Update: This was a lie. I first wrote this March 27, 2023. It is now August September November and there still isn’t even a prediction about when Adderall will be back in stock. My Wellbutrin has also decreased in efficacy, so I’m drifting back towards unmedicated levels of energy. I recently started using Auri mushroom gummies which seems to be helping--or it could be the unhealthy amounts of sweet iced tea and Mountain Dew I drink daily for the caffeine and sugar boosts.)
I also recognize how lucky I am that this happened during a semester where I wasn’t teaching, that I’m in a flexible job where I largely get to make my own hours, and that I have a safety net of family to help me out and make sure I don’t end up unhoused. Many others are far less lucky.
This drug shortage crisis is also happening with an essential diabetes drug, Ozempic, and the patients who use it for diabetes care can die without it. Asthma medications are also being affected, which again, is a life threatening condition. So if you know, or are, an ADHD person (or diabetic or asthmatic), give them a break. If appropriate, give them a hug. Don’t worry if they suddenly burst into tears—your kindness may have just tipped them over the threshold. And if you see a woman in noise-cancelling headphones and a face mask crying in a Costco pharmacy, just leave her be. She’ll pull herself together soon enough.