Does Insomnia Carry a Social Stigma?

My aunt and uncle from LA recently visited me here in Ann Arbor. I spent a fair amount of time with them when I lived on the West Coast, and over the years we’ve had lots of intimate conversations. They’d read my book, The Savvy Insomniac, and the first thing they said about it was this:

“We never knew you had such a problem with insomnia.” Implicit was a question: Why didn’t you ever mention it to us?

hiding-insomniaMy aunt and uncle from LA recently visited me here in Ann Arbor. I spent a fair amount of time with them when I lived on the West Coast, and over the years we’ve had lots of intimate conversations. They’d read my book, The Savvy Insomniac, and the first thing they said about it was this:

“We never knew you had such a problem with insomnia.” Implied was a question: Why didn’t you ever mention it to us?

I was actually surprised to find out I hadn’t spoken about my sleep problem with these family members. I answered as truthfully as I could:

“There’s a stigma attached to insomnia,” I said, or something to that effect. “I didn’t use to say much about my trouble sleeping. I didn’t want people making assumptions about me, like I had big psychological problems or I was making a mountain out of a molehill, or something like that.”

A Pervasive Social Stigma

Part of what motivated me to study insomnia was the social stigma I felt was attached to it. I wanted to understand where it came from and why it’s so enduring.

Other insomnia sufferers also perceive this stigma. A number I’ve spoken with feel that family and friends don’t understand what it’s like to struggle with persistent insomnia, and that they make negative judgments about people who have it (or they would judge us poorly if they knew). So we end up keeping the complaint to ourselves . . . and feeling like we’ve got to tough it out on our own rather than reaching out for help.

Still other insomnia sufferers say they have no reservations about discussing their sleep problem, adding that the normal reaction they get is sympathy. I overheard a sleep therapist say there was no stigma attached to insomnia, and I wondered if the stigma was finally dying out.

But recent studies exploring the experience of insomnia suggest the stigma persists. Of 24 insomnia patients interviewed at the University of North Texas, “38 percent of the sample directly admitted to feeling stigmatized about their problem sleeping,” and “more discussed it indirectly in terms of isolation and feeling different.”

Do You Feel This Way?

These testimonials are taken from the study above and from similar studies conducted in Scotland and Pittsburgh. See if they reflect a part of your experience with insomnia:

  • “I felt like it was . . . a disgrace? Like why am I weak and why can I not get over this? It’s a thing you feel a little bit guilty about. You know, I am tough and strong and I can do this myself. That was one reason I waited [to look for help].”
  • “I feel embarrassed even to discuss about my sleeplessness, why I’m so tired, why I’m dull, why I’m not performing maybe to my friends’ expectations . . . to the world, it is a problem you can sort out.”
  • “When I tell my family I have it, they all laugh. They say I need to see a psychiatrist. I thought I was nuts. . . . [Even now] I can’t really talk about it with anyone except my doctor.”
  • “Other people think you’re a freak” . . . “a liar” . . . “a hypochondriac.”
  • “People might see that some days I do okay but not most days. . . . I think they wonder if I’m faking when I talk about how hard things are.”

Beyond Embarrassment and Isolation

This sense of being misunderstood, and the shame and isolation that can take root in those of us who suffer insomnia, is apparently fairly common. These feelings and attitudes get serious treatment in The Savvy Insomniac. The overall aim is to encourage people to move beyond them and see persistent insomnia as a serious health problem deserving of attention.

For now, in case you’re resigned to carrying on as a poor sleeper, keep these things in mind: chronic insomnia compromises day-to-day functioning and long-term health. Avoid mentioning it to friends and family if you must–but do continue to look out for help.

Are you guarded about discussing your sleep problem with others? If so, why?

More Than Just Poor Sleep

Insomnia is about more than just poor sleep. Sometimes it’s about isolation, 24/7.

Insomnia and loneliness go hand in handInsomnia is a lonely affair. No one’s up at night to keep you company, no one’s awake to talk on the phone. Apart from anonymous exchanges on the internet, you’re cut off from the warmth of conversation.

Nor can you give yourself fully to things that might otherwise appeal. Mentally and physically at low ebb, you can’t engage and take pleasure in many activities you normally enjoy.

Darkness restricts your ability to see beyond the walls of your home. You don’t get the long view, the familiar distracters. Inevitably you’re thrust inside yourself. And that can be distressing.

“You have these terrible, terrible night thoughts,” the novelist Ella Leffland said in an interview some years ago. “I think when you have insomnia, this is something that you come to understand very well: that you are alone and you are yourself, and nobody’s going to help you get through the darkest hours.”

Lonely by Day

This sense of isolation doesn’t necessarily end with the coming of the day. Trying to talk about persistent insomnia may make you feel misunderstood and lonelier still, as one participant in a focus group explained: “I feel very isolated about, basically, that nobody can conceive what it’s like … they once had a bad night’s sleep and so they ‘know what it’s like’  and they ‘just got over it’ … so it’s something obviously lacking in me.”

Christie, an insomniac I interviewed for my book, had a sympathetic fiancé, but there was no one in her life who really understood her situation. “I still feel like I’m alone with the problem,” she said. “It’s something that I’m going to have to figure out on my own.”

Avoiding Others

People with chronic insomnia may also turn away from personal contact, isolating themselves even further:

“When I haven’t had enough sleep, I want to be isolated and not have to make a lot of decisions.”

“I don’t contribute in the group chats. I often feel as if I just want to be alone and will disappear during break.

“I feel drowsy, unproductive, grumpy, sometimes tearful and anti-social. I just want to be left alone.”

Insomnia is about more than just poor sleep. Sometimes it’s about isolation, 24/7.