Dear Virginia Hughes: I’m Not A Liar, A Drug Abuser, Or A Rapist. I’m Just Exhausted.
Tags: Science Communication, Sleep, Chronic Illness, Pharmaceutical

Dear Virginia Hughes: I’m Not A Liar, A Drug Abuser, Or A Rapist. I’m Just Exhausted. Rey Aug 23·6 min read

In response to NYT Article “F.D.A Approves GHB, a ‘Date Rape’ Drug, for Rare Sleeping Disorder”

I have Idiopathic Hypersomnia, a neurological disorder that causes constant fatigue and daytime sleepiness, even after long periods of rest. I was diagnosed in 2020 at the age of 24, but had been living with symptoms since around age 17. Those of us in the IH community have been eagerly watching the development of new medications, and we reacted with joy to the news that Xywav became the first FDA approved drug to treat IH.

That is, until Virginia Hughes’ article for the New York Times dropped.

Ms. Hughes neither respects the seriousness of our condition nor the gravity of finally having a singular FDA-approved treatment. Her article is a mess of clickbait (comparing sufferers of a rare illness to rapists in the headline), dismissal (calling it a “mysterious disorder” with “symptoms that overlap with many other conditions”), fearmongering (“the more people who take the drug, the more opportunity for abuse”), and suspicion (“many more people with daytime drowsiness might wind up with this diagnosis now that it has an FDA-approved treatment”). She spends more time in the article talking about date rape than she does about what living with IH is really like. Since her article fails to delve into the matter, allow me to describe it for you.

Living with IH is like living in a world where every day you are forcibly assigned a random sedating medication. Some days the sleepiness isn’t so bad: it feels like battling a single antihistamine, maybe, and you’re a little tired but generally okay. But some days you enter the battle arena to find Propofol and you know already it’s an impossible fight. The entire day will be spent in exhaustion, your body feeling like it’s full of TV static as your brain desperately tries to get you to fall asleep at every opportunity. I’ve fallen asleep in the usual places — class, on the bus, in my office chair at work, in yoga class, on the couch watching a movie. But I’ve just as often fallen asleep in places so unusual that it befuddled me pre-diagnosis: in a meeting while talking to people. While standing up. While in a standing meeting. Imagine standing up but your body is so exhausted that it’s physically painful, your eyelids are trying their hardest to slam shut, and you are trying to focus on the conversation at hand — it’s a horrible loss of control over your mental and physical presence.

And just like with anesthesia, there’s no real use in fighting it. You will not win, no matter how much you try. If you give in and allow yourself a midday nap, good luck waking up without the sleep drunkenness keeping you in a firm grip, filling you with a woozier version of the TV static that keeps you from thinking clearly, remembering your to-do list, or even caring about anything other than trying to get the exhaustion to stop. And for your body, always desperate for sleep, the simplest way to do that is to simply fall asleep again, and the cycle begins anew.

So what is to be done about this debilitating disorder? Currently, not much. Getting diagnosed with IH is an obstacle course in and of itself: you first must rule out every other possible condition with excessive daytime sleepiness (EDS) as a symptom, which can take a while (especially if, like me and many others, you have comorbidities with your IH). After that comes the at home sleep study, the overnight laboratory sleep study, and the daytime nap study, and your results from those must both meet the criteria for an IH diagnosis and rule out other sleep disorders like narcolepsy or sleep apnea. Once you get to that point, it’s sort of doctor’s discretion since before Xywav, there was no specific FDA-approved treatment for IH. Generally, people end up cycling through a list of off-label medications from antidepressants to stimulants to sleeping pills, or some combination thereof. Treatment can be fraught: from insurance companies denying coverage of off-label medication to excruciating side effects to developing a tolerance towards certain medications and losing control over your symptoms. IH itself can ebb and flow, leaving patients constantly worrying about their condition deteriorating to a point where they can no longer drive or work.

Xywav, for this IH patient, represented a major step forward: in recognition of IH as a serious condition, in raising awareness of IH generally, and in uncovering more successful treatment options for this disorder in the future. I make no claims as to how effective this drug will be for me, or any other IH patient (as evidenced by the IH community — we’re all on different medications and different dosages within). I don’t make claims as to which of us will experience serious side effects and which of us won’t. I also don’t take issue with critiquing the high prices of lifesaving drugs or the capitalist method of profiting off others’ diseases. But I do take issue with this news being used to smugly disparage and cast suspicion on those of us suffering from Idiopathic Hypersomnia.

With any poorly understood disorder comes stigma, and sleep disorders are no exception. Add the fact that IH tends to disproportionately affect young women and you add medical misogyny to the mix. People with IH are seen as slothful and lazy because we can sleep for 11 hours straight and still be too tired to fully function. We’re seen as making up our disorder to get out of doing our fair share. When IH presents in women we are frequently misdiagnosed with depression or just “moodiness”. When young people present with IH, we’re seen as exaggerating our symptoms because “we’re too young to be tired” or “we won’t know what tired feels like until we have children”. And if we do get a diagnosis, it’s viewed with suspicion as a means to get access to the “perks” of medication, since that occasionally includes controlled substances.

Articles like Hughes’ absolutely hit every checkmark for an ableist view of Idiopathic Hypersomnia. Her article paints a fearful picture: masses of people pretending to have IH to access to a drug that can be abused with malicious intent. Of course, putting aside the fact that just about every drug in existence can be abused with malicious intent, I don’t think that Hughes understands the process of being prescribed a controlled substance for a medical condition. It’s not as easy as the cultural stereotype would suggest — we can’t just brazenly walk into a doctor’s office, declare ourselves sick, demand a particular drug, and walk out with full bottles of pills in hand. In my experience, taking a controlled substance requires a fresh doctor’s sign off every month, ID checks at the pharmacy, no leniency on the number of pills (even if you, say, wake up with horrible sleep drunkenness and accidentally knock your open medication bottle into the sink… not that that’s ever happened to me, of course), and paperwork galore. And that’s not even to mention the fact that, as previously described, IH does have multi-step processes with strong diagnostic criteria that can take years to complete (and they are hard to fake — unless there’s a way to manipulate your own brain waves that I haven’t heard about).

If there are doctors out there willing to immediately throw Xywav at anyone who says “I’m sleepy during the day”, then they should be held accountable. But they aren’t the fault of IH patients. Despite what Hughes seems to suggest, we aren’t responsible for the misdeeds of people who use GHB for nefarious purposes. We aren’t responsible for any loopholes in the system allowing people to get GHB who don’t really need it. And we shouldn’t be punished for those who do. We need this medication to try and help make a dent in the life-consuming nature of this horrible neurological disease. Comparing us to date rapists and suggesting that we’re all collectively exaggerating our condition to get drugs is inappropriate and actively harmful.

Those of us suffering from IH deserve a change to the NYT headline and an apology from Ms. Hughes, at a minimum — though based on the number of days passed since the article was published (and even with an official rebuke from the Idiopathic Hypersomnia Foundation), neither is likely to happen. We are not a loud and mighty crowd — we’re a small bunch of exhausted people just looking for relief. We don’t really have the energy to fight this. But even without big loud crowds on our side, we still deserve respect and resources for the daily fight we face to finally feel rested.