Neglecting chronic illnesses in mental health care
TW/CW: This article includes reference to suicide.
Ignorance of idiopathic hypersomnia and other rare diseases contributes to the neglect of chronic illnesses in mental health care. | Photo credit: ©tugolukof / Adobe Stock
Neglecting chronic illnesses in mental health care
AV Nordgren explores their mistreatment as a patient with chronic physical illness in the realm of psychiatric care.
"Better"
I was released from overnight observation in the ER's mental health crisis unit earlier today. To tell you the truth, I do feel a bit better, but not entirely. There's this line from Virginia Woolf's suicide note– the first line– it sticks with me even now; it echoes inside my head, reverberating, ringing.
Dearest, I feel certain that I am going mad again…
That's what it feels like, isn't it? This endless cycle of relapse, recovery, relapse, recovery– there's no destination here, only the long ardors of the journey you never wanted to take in the first place. Let me tell you something: at Bridgeport Hospital, there's this bench in the ER. It's nothing special, I suppose, but this bench has become a central part of my life. It's almost like it has its own gravity. I keep returning to it, again & again & again.
The first time I sat on this bench, I was seventeen years old, and it was Halloween night. My mother was with me, and she wouldn't stop crying. I felt guilty, but the guilt was fuzzy along the edges, like it didn't actually matter.
Back then, nothing mattered.
Eventually, the triage nurse called me into the room, asked me questions, and took my vitals.
She sent me to the crisis unit, where I would remain until the following afternoon before being transferred to the pediatric wing of the psychiatric hospital in Westport. Three years later, I was back on that bench, lingering just within eyesight of the police officers stationed in the Emergency Room.
Things still didn't matter.
Relapse and recovery cycle
The following year, I was back once again. This time, I wasn't suicidal— or no more so than usual. I was dissociating so severely that I didn't even feel real. I felt like the world was one thing, and I was an entirely separate thing. I kept rocking back and forth, knees hugged to my chest, and I murmured a few words to myself over and over again, a chant almost, a mantra:
I don't exist, I don't exist, I don't exist, I don't.
Do yourself a favor: avoid Serotonin Syndrome at all costs.
A few years after that, I would return to the bench. A year after that, I would be back again. Part of me wonders if I'll ever escape that bench, if I'll ever truly get away from it.
Is the timeline important here? Is the sequence of events significant? Do you care that I have had two inpatient hospitalizations, been under observation in the ER's crisis unit three times, and have done four intensive outpatient programs? Does it matter that all this happened to me, most of it just over the past two years of my life?
"You & I, we were born to die…"
At this point in my life, I am twenty-four, living with my partner for many years, and in grad school to get my MSLIS. I am still mentally ill. At the very least, I have Borderline Personality Disorder (BPD) and severe depression. Today, I went to therapy and said, "I think I'm in a depressive episode." My therapist, L, told me to contact my psychiatrist to adjust my meds.
I do not want to go back to the hospital.
Idiopathic Hypersomnia vs Narcolepsy Type II
The last time I was an inpatient was a few months past twenty. A year later, I would start developing Idiopathic Hypersomnia, a sleep disorder that's quite similar to narcolepsy, but far more rare. Some doctors and researchers have advocated for it to be called Narcolepsy Type II because both illnesses react similarly to the same medications. As it is today, it's still called Idiopathic Hypersomnia. This fancy phrase essentially means, "You sleep a lot, but we don't know why." Before I was medicated, I would sleep 15+ hours a day every day. But no matter how much I slept, I was still tired.
It's the type of tired that makes your bones ache, the type of tired that buries you alive.
"How hard it is to sleep in the middle of a life."
I struggled for years just to stay awake, to live without my bed's gravitational pull dragging me back, time and time again. I suffered from brain fog, intense fatigue, sleep inertia, and memory loss. When you have idiopathic hypersomnia, you don't often enter REM sleep. Because of this, your brain struggles to hold onto memories. They slip away like water between your fingers.
I still struggle with these symptoms every day, but I am managing. That's the critical part. I am managing. Every morning, I wake up, and the first thing I do is take my medications– I call them my awake meds. The first is Wakix, a specialty prescription intended for narcolepsy that I have to have shipped to me each month. This is supposed to help with the excessive daytime sleepiness. The second is 30mg of Vyvanse, a stimulant used simply to wake me up. After that's worn off in the afternoon, I take 40mg more of Vyvanse. I'm on the absolute maximum dose for both Vyvanse and Wakix, and still, some days, I struggle, so I supplement with caffeine and loud music.
When I was first held under observation, it was early 2022. I was so tired that I slept the majority of the three days they kept me. I felt so groggy and dissolvable. I felt like a salt tablet placed in warm water. I was sitting on the train on my way home from college days later when I looked at the aftercare summary. That's when I discovered that the hospital hadn't given me my awake meds at all …
"i don't want to die, i just want to lie on the road for a little bit."
My chronic illnesses was neglected while in mental health care
I felt sick. I felt violated. I remember crying, thinking they had not given me the meds to keep me awake because patients are more complacent when they're asleep. When we're asleep. The next time it happened was after I tried to kill myself that Memorial Day. This time, I went to a different hospital, but they still kept me asleep. In their notes, they said they didn't see any reason for the medication I was then on– Sunosi. Only, they kept misspelling the name.
The issue is this: I have a rare disease. Idiopathic Hypersomnia victimizes less than 0.01% of the population. Because of this, most of the medical community has never even heard of it, and they don't try to learn when they encounter a patient with it.
Why should I tell you I have narcolepsy just for you to believe me?
Why is the burden of your ignorance on me instead of you?
It doesn't matter if a highly trained sleep specialist at Yale Medicine has decided I am chronically ill, that I need these medications. If a psychiatrist in the emergency room doesn't know what they're used for, then I'm doomed to sleep.
How the hell can I get better when I'm asleep for three-quarters of the day? I come to you to keep me safe. To keep me from killing myself. Instead of helping me, you keep me in a sleep-ridden purgatory; you keep me complacent and obedient; you keep me comatose.
"It is June. I am tired of being brave."
Not every mental health patient is able-bodied
I am aware that the psychiatric healthcare system is somewhat inundated with patients. Especially since the COVID-19 pandemic, it seems that the mental health of community members has rapidly spiraled. I suppose that makes sense, given the millions of people– friends, colleagues, family, lovers– that have died, given the continual threat looming over us of our own decline and deaths.
You cannot put a whole world in isolation– even to protect themselves– without there being consequences. The consequences were rising domestic violence rates, higher rates of suicide, and worsening depression and anxiety.
I remember that my partner once told me I have an End Of The World mentality. I told him that's because, for me, the world has never not been ending. During COVID, it felt like the end of the world, not just for me, but for all of us.
& is that any excuse? Just because you have an influx of psych patients, does that justify not giving them adequate care? Just because some of those patients have chronic illnesses– & some of those illnesses are rare– is that any reason to deny them their prescribed medications?
At the end of the day, the facts are these: the psychiatric hospitals and emergency departments for those in crisis are being flooded with patients, and they don't have the time to give each and every patient the care they need and deserve; because of this, especially when a patient has a chronic physical illness, we get neglected. This is not the way things should be. If they need more staff, hire more staff. Ask us or our prescribing doctors if they need to know what our medications are for. If they don't understand something, they must seek further education.
Not every mental health patient is able-bodied.
Denying patients their necessary medications because you do not understand their function is not just ableism; it is malpractice. Do better.
AV Nordgren
AV Nordgren (they/them), the author of "Neglecting chronic illnesses in mental health care," is a queer young adult from rural Appalachia currently residing in New England. They have a BA in English Literature with minors in both Art History and Gender Studies and are currently a graduate student studying Library & Information Science at the University of Illinois at Urbana-Champaign. They also have an unhealthy obsession with Charles Dickens, Star Trek, and all things magical.
