A common responses I get when I mention my chronic insomnia is along the lines of “Me too! If I get too stressed sometimes I can’t fall asleep and then I’m shit at work the next day.” Now, I appreciate that this kind of response is trying to validate a difficult experience by relating to it, but what it actually does is the exact opposite of that. Many people also tell me to try lavender essential oil or yoga or meditation or even prescription drugs, and don’t seem to understand that it’s like telling a person with diabetes if they’ve tried eating less sugar. And the worst part of it all is that most people don’t seem to fully understand that staying up late all the time is not a choice for me. Even when I tell people I have tried yoga, essential oils, reading before bed, not eating 4 hours before bed, exercising, listening to soft music, warm milk, therapy, not using electronics at night, sleep masks, cutting all caffeine for a year, melatonin, breathing exercises, herbal tea, hot showers, a low-carb diet, Chinese medicine, as well as 5 different prescription pills…. they almost always still have a great idea for something else that just might do the trick.

If you’ve responded that way, it’s not your fault. Insomnia is largely seen as a minor and occasional ailment that occasionally affects everyone, kind of like headaches. This article is about why it’s not like that at all, for chronic sufferers like myself. My chronic insomnia actually has interfered with both my work and my relationships in significant ways. And that’s because for me, it’s not as easy as getting too stressed out, sleeping badly for a night or two, and then catching up with life for the rest of the week. For me, as I’m sure it is for many other people, it’s more like weeks and weeks, if not months on end, of insufficient sleep on a nightly basis (for me its 4-ish hours, sometimes less), followed by weekend sleep-binges trying to catch up. So during the week, you’re zombified from exhaustion, and on the weekend you’re zombified from oversleeping. And it interferes with everything.

Insomnia affects physical health in a very real way. After keeping a wellness journal for a few months, I noticed my digestion, and shoulder/neck pain levels, which I had seen as unrelated for a long time, all worsen steeply at the onset of a wave of insomnia. When I’m in it, I also have no energy to go grocery shopping, cook, or wash dishes. I try my best to eat healthy but sometimes takeout and nutritionless quick meals are all I can handle. And forget about exercise, when your body is raging against you for not giving it the rest it needs, exercising would be actual masochism. But even doctors, who know the importance of sleep for a healthy body, seem to brush it off at checkups by briefly suggesting “stress reduction” before moving along. I do my best to take care of my body in whatever ways I can, nonetheless. I take walks when I can, and grab fruits and veggies at the grocery store that’s on my way home from work. Imagine how much healthier my body would be if I did all this AND slept an adequate amount.

Insomnia also affects social life in a huge way. I simply don’t have the energy to meet up anyone after work, I’d rather go home and lie down with my book. On the weekends, I am either sleeping in to catch up, or spaced out from sleeping too much at once. It’s a brain fog that is not exactly conducive to interesting activities and conversations. But My friends don’t get that I am cancelling dinner because I am physically and mentally incapable of being social. They don’t get that I can’t go hiking on Saturday morning because I desperately need to sleep in. They don’t get that I’m quiet because I’m tired, not bored. They think I’m just lazy or being a bad friend. But I try to adjust my schedule so that I can see them on weekend evenings, or have them over to my house. I try to make it up to them with Facebook messages and quality time rather than quantity time, but imagine the strength of my relationships if I spent lots of quality time with the people I loved, instead of having to ration it.

The scariest part to talk about is how it affects my job. I am always able to do my work as expected, but insomnia drains the joy out of it, and definitely affects the quality. One of the reasons I chose teaching as my profession is that I enjoy it, and don’t spend the day looking at the clock counting down the hours until I get to go home. When I’m sleep-deprived, I teach just to get through the day, not because I love it. I can’t deliver the same quality of lessons to my students either. But my boss doesn’t get that a no-sleep night is a valid reason for calling in sick, that I simply cannot be at my best in that condition through no fault of my own. She doesn’t get that I might need more time to grade a set of essays, because I want to be able to add constructive and insightful comments to them. She’d just tell me to get them done during one of my all-nighters. Nonetheless, I work twice as hard in order to keep up, and most of the time I can. Imagine if that energy went to becoming an even BETTER teacher, instead of just keeping up!

Despite all of this, I want to briefly examine the greatest potential benefit of insomnia not being taken seriously as a medical disease or disorder: it’s seen as largely inconsequential on productivity and success, and is therefore not seen as a preexisting condition, or a discriminating factor in employment or even in relationships. So basically, despite all the things I mentioned above, it probably won’t cost me a job, a friendship, or insurance coverage on the basis of insomnia alone. And I don’t think it should – as I mentioned, I put in 200% in every area and am able to keep up (though obviously it would be better if I could put that extra 100% towards growing and improving rather than simply holding on). To be clear, I also don’t believe people with other medical conditions should be socially, politically, or medically discriminated against either. But I must admit there is a certain level of privilege that seems to go hand in hand with the illegitimacy of this illness.

While it can be a good thing, in the sense of not being judged harshly or discriminated against, that insomnia is not viewed as a serious disease, it is extremely isolating to feel misunderstood on such a major issue in my life by so many. There are also very few accommodations made for it, which might be made for more “serious” illnesses in some cases (though I am certainly aware not in all cases). What if insomnia sufferers got a little more understanding from our friends, families, coworkers, bosses? What if our doctors referred us to specialists and sleep studies more quickly/easily, closely monitored related conditions that can arise as a result of sleep deprivation, and generally didn’t treat us the same as occasional-insomnia patients?

The only people who do seem to get it are other chronic insomnia sufferers I know, and the close friends and family who have supported me through many seasons of sleeplessness. And I think they didn’t really understand it before they saw how much I struggle with it on a daily basis, before they saw how much more difficult it makes things in my life that shouldn’t be difficult. Before they saw how hard I worked to try and treat it and the ridiculous scope of the treatment options that have failed to help me in the long-term, they probably also suggested a glass of warm milk with honey to complaining insomniacs. Maybe I would do the same thing, if I didn’t have to deal with it year in, year out.

If you’re not an insomniac, don’t feel bad about not having taken it seriously until now, just try to show a little more empathy to those sleepless souls that walk the earth by day. A little leeway and understanding goes a long way in an insomniac’s life. And if you are a sufferer, just know that you are not alone, and yes, it is really really hard to live with, even when no one seems to see it that way but us.