September 23, 2011
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Last week, a reader sent me a note: “I wish I could understand what it [addiction] feels like.” For you, dear reader, in the best way I know how to explain:
It’s hard to confess that I have a problem with sleep, but I do. I’m a narcoleptic. Some days I feel like an alcoholic — unable to think of anything else but the craving. Sleep and I have a tumultuous relationship. I’m constantly exhausted and wanting more, more, and will never turn down a nap. On the other side of the coin, or pillow, I despise it. The current medical answer for me? Downing a combination of stimulants and anti-depressants, carefully enabling me to be awake and alert while only minimally zombie-like. The short answer is there is no answer.
Does the need-hate relationship sound familiar? The same is true for addiction. (To note: narcolepsy and addiction are not identical disorders, but I’m using the similarities to describe the feelings of addiction as best I know how.)
Until now, I’ve made it a policy to tell only the closest people in my life, though this would likely benefit all of my acquaintances (i.e., if my eyes glaze over, it’s not you!). I do this mostly to avoid the bug-eyed looks and discomfort, or the question, “Do you fall asleep standing up?” (Answer: Yes, I have. No, I do not do so often.)
Hiding It: Shame and The Emotional Cycle
Most addicts harbor an urge to hide what feels like a terrible secret, myself included, though it’s just biology.
Worse than hidden mental battles are those that scoff. Various relatives have fallen into this category and have tried to shame me awake over the years: “If you loved me, you’d want to spend time with me while you’re visiting; you wouldn’t want to sleep.”
This ignites screams and fire in my head. Emotional blackmail doesn’t work on a neurological disorder any more than it works tell someone with a heart condition that, if he loved you, he could walk up a flight of stairs without resting. (To be fair to families and friends everywhere, it does take time to understand and discover mental disorder implications.)
The irony: when relatives play the emotional hand to encourage me to stay awake, my stress level spikes, which triggers my need to sleep. Addicts feel an overwhelming need to use in stressful situations, and then they feel irrevocably guilty, since really they don’t want to use the stuff in the first place. Guess what? I would love to be awake! Addicts would dearly love to lose their compulsion to use.
Daily Life
Like an addict, I spend my days trying not to think about it, trying to avoid situations that set me off. Situations like being near a bed, or the dreaded 1-3 pm block during the day, or just thinking about sleep might be unique to narcoleptics, but other compulsions are not. For instance, emotional situations either good or bad (i.e., family turmoil or a great new job) send addicts spiraling. At such emotional cues, for me, it’s as if the universe’s force momentarily manifests to drag my eyelids closed.
As you might guess, the constant urge to sleep (or use) leads to interesting psychological encounters and relationship problems over the years, and at times I’ve questioned myself and my sanity. Whether it’s sleep or cocaine, the feeling is that there’s something badly wrong with you, when you go on a drug binge around holidays or fall into a coma-like slumber after a fight.
My psychiatric conversations can be summarized neatly like this:
Psychiatrist: A lot of people that are depressed feel the urge to sleep. Do you feel depressed, or sad?
Me: No, I’m not depressed. I just need to sleep.
Psychiatrist: That might mean you’re depressed. It’s perfectly OK to feel depressed.
Me: I know it’s OK. But I don’t feel depressed. I’m pretty happy in life.
Psychiatrist: I think you’re denying the fact that you’re depressed.
“Circular,” “tiresome,” and “discouraging” are mild terms to award the frustration I’ve felt. Unfortunately, many a therapist isn’t trained to counsel and treat addiction or similar disorders. Diagnoses are hard and take years, especially when there isn’t a cure-all solution.
Really, there could be any number of things wrong. Many addicts begin therapy for what are called co-occurring disorders, like addiction and depression. Addiction sometimes bleeds into other problems, or trades one form for another, opiate abuse for an eating disorder. Sometimes medication makes you feel more unhinged than before or like another person entirely. You start to lose sight of yourself and who you are. Is it “you” when you use illicit drugs all the time? No. Is it “you” when you feel like a robot on treatment medication? It takes time, patience and personal exploration to find the right balance. There’s no quick fix.
Work Balances
Addiction can take tolls on your career, and actually frame the shape of it, in less than obvious ways. It’s more than missing work or punching the time clock while under substances’ effects: it’s a problem with the industry and work itself. I’ve known pharmacologists who handle pills they abuse all day, or restaurant servers who ferry customers alcohol. Now of course, there are ways to get around these things (having someone else physically handle the prescription drugs, asking someone else to serve spirits), but it’s something that rests perpetually on the brain.
For a long time, I was intent on going to medical school and finally, and after a long personal game of tug of war, I chose not to go. The major reason? I didn’t think I could stay awake during the infamous ‘round-the-clock shifts of medical school. I was scared and didn’t want to ask for special treatment, knowing the internal politics of hospitals. Long term, I didn’t think I could handle the lengths of shifts or the uneven schedules of shifts without rest. I still think about trying it, going back to study medicine. In my heart, I know it would never work, at least not in the way I would want it to. Addiction can actually change lives and careers; this disorder has changed mine.
Day-to-Day Management Tactics
It isn’t all bad, and I live a happy, full life. But it should be said how aware we have to be. That’s the word, Aware. I lump myself in with addicts here. What do I have but a sleep addiction? (Actually, addiction and narcolepsy are closely related genetic disorders, which I’ll get into in a later post.) But that’s what it feels like. I have to plan my days through a different veil than most people, and have an Out plan in place. I’m going to a party? I’ll get there early so that I can leave if I feel tired, without seeming rude.
Some days and events coalesce into Situation Roulette. Sometimes I might be able to stay up until 2 a.m. without any more of a problem than the next guy. Sometimes an addict might be able to walk near the beer aisle safely. The cravings’ timing varies and is malleable, which makes the disorder harder to understand. At times, after five minutes of being the living equivalent of the Walking Dead, I can fight through it.
Addicts all have trigger cues, or settings where they’re more likely to use. Sometimes alcoholics need to leave a party when champagne appears. I’ve had panic attacks when I felt too far away from a place to sleep, once at a crowded, noisy rock concert thousands of miles from home.
What It All Means
Addiction is confusing, inconsistent and inconvenient, just as much so to addicts as to family and friends.
A friend once asked what reaction I’d like from people, or how he could help. Giving love and understanding helps. Trying to understand what I’m going through helps, because sometimes I don’t know how to express how it feels. Like describing an emotion, sometimes it’s hard to form in words, especially if your audience can’t fathom feeling the same way. The point is, though, to try.
I’ve nearly ruined relationships by my inability to explain my disorder, by hiding it and by just not knowing. I didn’t know then what I know now. Being explanatory, honest and open to questions converges as the pinnacle of success for most things — this is no different.
I think I can speak for most addicts in a note to family and friends:
We do love you, and we’re sorry we put you through this hard journey of ours. We don’t mean to, and we’re trying to figure out how to work on it. The trouble is, no one really knows how. But don’t write us off yet. For everything over the years, Thank You.
About the Author: I’m an Interactive TV Producer in New York City; a writer and former chemist. I've seen people do anything to Feel Normal. Follow on Twitter @cassierodenberg.
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Wouldn’t it be more useful to hear what it feels like to be an addict from an actual addict, rather than from someone with a disorder that’s sorta like addiction?
Link to this@Lemonick — you’re right, and I certainly want to host a guest post, or several, from an addict. I just thought I’d share a little about me, to make it a more clear why I care about the addiction and mental illness topic as much as I do. In fact, narcolepsy is genetic and often arises in families with addicts…the two are closely tied. I’m looking forward to exploring how in a later post!
Link to thisI have narcolepsy also, and this is a pretty right-on description of what it’s like. I hadn’t thought of it’s similarity to addiction before, though I have often described that desperate craving for sleep as being something like what I imagine a heroin addict feels: I want it so bad it is physically painful. I have never felt this way about a substance, though.
Unlike you, though, I have been pretty upfront about it since I was diagnosed. For one thing, I don’t drive, which is pretty unusual where I live, and I feel like people assume it’s on account of a DWI or some such. I have no idea whether that is really true, of course.
I also find that people are a little less weirded out by my constant doodling and pacing and fidgeting in situations where that’s not entirely normal. Not to mention my erratic timing and bizarre memory lapses.
But before I was diagnosed, I was frequently at a loss to explain myself.
Link to thisAnd another thing: I’m really looking forward to more on this topic. There are indeed addictions in my family and a couple of folks I suspect have (or had) narcolepsy.
Link to thisIs this a p*ss take?
The need for sleep is no more an addiction than the need to breathe. If your body is telling you to sleep then sleep. Obviously you are not getting enough sleep and you need to cut the stimulants out of your diet and eat a little cleaner. If you cleaned up your diet and found a decent work/rest balance it would relieve you of your apparent problem.
Listen to your body it knows best!
Take care x
Link to this“If you cleaned up your diet and found a decent work/rest balance it would relieve you of your apparent problem.”
Have you ever noticed how ignorance and the need to moralise go hand-in-hand?
Is it because ignorance makes people simple-minded, and moralising is the simplest of all pseudo-solutions to problems? Or is the causal relation reversed?
Either way, treating medical conditions as moral weaknesses, or moral problems as medically treatable, does seem them most common way to miss the point of both.
Link to this@Nora So glad to hear this resonates with you. You’re brave to be so up front — I know I’ve fallen into the trap of thinking I could control narcolepsy, which of course, you can’t.. I think addicts often feel this way, that they should be able to control their cravings. It’s very much a mental stigma, but one that comes with very real pacing, memory lapses, and hallucinogenic dreams!
It’s not surprising that you haven’t had substance abuse problem. Not to spoil a future post, but narcoleptics are extremely unique in drugs’ regard. Shoot me a note if you’d like a sneak peek. I’d love to connect and talk with you! cassie.rodenberg@gmail.com
Link to this@Neosteo Narcolepsy is a neurological disorder — take a look at what that means here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001805/ Though it does help to eat in certain ways (I’m vegan) and ensure that I get a recommended 8 hours of sleep a night, it won’t solve the problem. Biologically, narcoleptics have reduced amounts of a protein called hypocretin in their brains. I’ll explore more about this in a later post, but because of the very real nervous system deficit, this is a chronic, lifelong condition.
Link to this@Kapitano Either way, treating medical conditions as moral weaknesses, or moral problems as medically treatable, does seem them most common way to miss the point of both.
Thank you for your eloquent words of support. This is such an unfortunate problem, which certainly makes those with addiction and medical conditions more prone to hiding their disorders. My goal is to open the conversation between those with such disorders and those without…but it’s an uphill battle against stereotyping.
Link to thisI was not diagnosed until my late 30s, but have had problems since childhood, including cataplexy, excessive sleepiness, hypnogogic hallucinations, and sleep paralysis. I also have a separate sleep condition, an intrinsic circadian rhythm dysfunction, that makes sleeping on a “normal” schedule difficult under even the most optimal circumstances.
I have lost jobs, dropped out of graduate school several times, and I do not drive and can’t safely ride a bike in traffic. Sharing a bed on an ongoing basis with another human is out of the question, and my dogs are too annoyed by my thrashing around to sleep with me. I rarely watch movies or television, I read or knit while walking around the house. I work standing up or seated on a bouncy ball, listening to loud dance music. At meetings or in classes I frequently stand at the back and pace. I don’t go to the gym after work or go out in the evening any more because eating or vigorous exercise late in the day keeps me awake.
Advice to sleep more and eat “right” is unhelpful and insulting.
Link to thisI feel compelled to post because I have narcolepsy also, and you really hit the nail on the head here.
One of the things that strikes me still to this day is a conversation I had with my aunt, who said she had looked up narcolepsy and that one of the common misconceptions about it was laziness. It is impossible to understand what it is like to be us – even we cannot imagine it for each other because I am sure I have narcolepsy at a different degree than both of you. But when I am exhausted and I just need to sit down and close my eyes for a few moments, it can be difficult for people to comprehend that need. How deep it is to my core the need to be able to just rest for a few moments.
Everyone gets tired, so it is hard to explain to people who are not narcoleptic how it is a different level of tired. The worst part is all of us with narcolepsy know what it is like to be not tired. No one feels this way from birth – the onset of symptoms comes for most when we’re in our 20′s, so we can remember a life with a normal sleep schedule; without having to balance ourselves on a steady diet of uppers and downers, not knowing what kind of damage we are doing to our body. I am sure addicts can relate, remembering what life was like before their chosen drug. I too, suffer from severe anxiety if I do not know when I will get somewhere to sleep.
I have a friend who suffers from cluster headaches, another rare and debilitating neurological condition. We often joke about how people tell me to “just have a cup of coffee” and tell her “take some tylenol” – when you have a disorder where the symptoms are internal, or where they are an extremely intensified version of something everyone experiences (i.e. the need for sleep, headaches) it is often harder to explain than one where it is obvious and not something most people experience (I could list about a million things in this category). It is hard for people to comprehend that getting some sleep, eating healthier, exercising, or drinking a can of red bull will not make it go away.
My schedule revolves around sleep. I take a stimulant to stay awake, so often I have to count backwards to plan my nights (“If I want to leave the party at 1, I have to take my medication at 8, so that way I will still be awake for an hour to have time to drive home, although the drive is only 15 minutes”) and I feel like Cinderella sometimes. (I often joke to my friends as I leave events that I am going to “turn into a pumpkin” if I don’t leave).
Thank you for posting this. I really look forward to reading further.
-Sarah
Link to thisHa! Sarah, I also use the pumpkin exit line.
The other kind of sleep episode is even harder to explain, when you don’t fell yourself getting “sleepy” in the ordinary sense, but you just suddenly find yourself waking up, sitting there wondering who noticed and what you missed.
I too operate on a delicate balance of substances, and worry a lot about addictions. And with or without genuine addiction or abuse, the increasing tolerance is enough to cause most pharmacists to react with alarm to some of my prescriptions. There was a time a few years ago that they called my doctor every single time I got anything filled, just to make sure it wasn’t a mistake. I’ve had pharmacists keep my prescription after refusing to fill it, insisting in one case that it was a lethal dose, or more commonly that my insurance wouldn’t cover it.
Link to thisWhat an excellent article. When we as a society finally get that the mental is just the physical in operation and not some foggy soul hovering about, maybe we’ll quit trying to guilt and punish and shame those close to us into changing, and start using techniques that really work.
Link to thisVery good article. I too have used examples like a heart condition to make my point to family members or friends. I don’t have narcolepsy, instead just the opposite, I am an insomniac. I was suprised to find how much our societal problems overlap. It seems that many people simply don’t want to or to make the effort to properly understand what it means to have a mental condition. You can’t or othr such nonsense. By far, the worst, are thick headed doctors. And when I have had little sleep my patience is extremely thin…
Link to this@poolpah Hi Sarah, thank you for sharing your story. This part really jumped out to me:
It is impossible to understand what it is like to be us – even we cannot imagine it for each other because I am sure I have narcolepsy at a different degree than both of you.
I think the same is true for addiction. Its disparate nature makes it difficult to peg universalities. The best we can do is share what this intangible thing means to us.
I hadn’t thought of it in terms of Cinderella before — you’re right, it’s just like that!
Please keep in touch, and don’t hesitate to reach out via email to continue the conversation
Link to this@wavenaboard the mental is just the physical in operation
Yes, exactly! To many extents, we’re all slaves to biological mechanisms. Unfortunately, getting this across to widespread audiences is quite the challenge. It’s much easier to shame and guilt than work for a solution.
Link to this@gmperkins So interesting that you relate as an insomniac! Do you find that negative associations are attached to the term? I think Sarah, above, used the “lazy” modifier to describe how others saw her narcolepsy — with insomnia, I would imagine that it could skew between “workaholic” and “creative genius.” Would love to chat more about it!
Link to thisI get used to get the “lazy” tag from family since if I am up all night and still goto some family event, I’ll be just wiped out and kinda zoned (and if I skip it because I goto sleep in teh afternoon…). When I was younger I was constantly being asked if I was doing drugs. I can’t describe how frustrating it is to tell the same story over and over, year after year to the same family members who simply can’t get it. No idea why but telling them I am very tired yet my brain will not goto into “sleep mode” won’t sink in. And afterwards I will get constant phone calls (now emails) on “sure fire cures”, oi. Anyways, I usually skip that stuff after being up all night but sometimes you have to go.
As for doctors it is always “anxiety”. I’ll explain I have had insomnia issues since high school but that never puts them off from their snap judgement. So for one specialist I took a leave of absence for a year. I have a great and understanding wife and kids. My life is very good. Just that sometimes I’ll be up late thinking. After 6 months of semi-vacation I asked him if he still thought I was “anxious”, heh.
It was a semi-boon in grad school. Was the one place noone thought twice about being up all night as abnormal
.
I hope that helps explain some issues a little further. In general, I find most mental conditions to be poorly understood by people and doctors. There is an immediate tendency to try and pigeon hole a problem into a few media driven boxes or the latest ‘hip’ drugs.
Link to thisI read your article and I appreciate your approach to addiction. The past has taught me that it doesn’t matter what the addiction is, as long as it is something that you are powerless with – alcohol, drugs, banana cream pies – it really doesn’t matter. I can tell you, from a long battle with heroin, that the addiction start out as a bold plan to destroy one’s life. It starts slow and gradually takes over every aspect of control a person has. I destroyed my life in record time and didn’t set out to do that. To me, heroin was instant peace, it wasn’t an illegal drug or something that was wrong, it was just simply peace. Growing up in an abusive house, and being sexually abused by my cousin laid the groundwork for a battle with addiction that would take me to the brink of insanity. It was only through the support of a wonderful agency in Scottsdale, AZ that I was able to understand the addiction and my past. How all of the factors that I grew up with impacted the path to addiction. Many people look at addicts as bums or losers. I can assure you that the people you least suspect often struggle with addiction. Addiction can touch the lives of the bravest, most successful, most confident leaving an unimaginable wake of destruction. Only in the clarity of hindsight can one truly appreciate the battle with addiction and the promise of each new day, simply one at a time.
Link to this