Hypersomnia Foundation

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Sleeping Through Life: My Experience as a Hypersomniac

When I wake up, pure unadulterated panic with a side of adrenaline courses through my body as I try to make sense of the world around me: what day is it? IS IT day? Or night? What’s happened while I’ve been asleep? Have I let anyone down (agaifullsizerendern)? Did I do anything in my sleep? Did I bear the brunt of any social media pile ons? Did someone hack my social media and out me (again)? Did I sleep through any holidays or birthdays?

I’m sure you’re reading this thinking: woah, woah, woah! Don’t catastrophize! It’s alright! You just went to sleep! It’s not like the world ends every time you go to sleep! You’re right! But..you’re also wrong.

If you’re like the typical person, you do your nighttime routine (don’t we all have one?) throw on your PJs and you crawl between your sheets, so grateful for the sweet, sweet embrace of your bed. And then, ideally, you wake up 8 hours later with nothing eventful happening in between, feeling bright-eyed and bushy-tailed and ready to tackle the day….right?! Totally!

Unlike most people, when I go to bed at night, I don’t know when I’m going to wake up because I have hypersomnia (hyper = from the Greek meaning over, somnia = from the Latin meaning sleep). I need to get at least 12 hours of sleep to avoid getting sick (separate issue: dysautonomia/POTS) but I usually sleep around 14 hours a night, sometimes longer. As an infant and child I often slept 16-18 hours. My mom said that it was hard for her to do anything with my older siblings because everything had to revolve around my sleep schedule. I can’t imagine how difficult that was.

Fast forward: as a 19-year-old, I had just started seeing a guy, and my mom was supposed to come into town and I was so excited to pick her up from the airport the next day. That night I went to a party with the guy I had been seeing and the next morning I was still so tired (legitimately tired) so I took a nap at his house. My mom’s plane landed and she couldn’t get ahold of me. She was terrified. She called and she called and she called with no answer.

I finally got ahold of her over two days later. I had been asleep the whole time. I wasn’t under the influence of anything other than my own body. I was just so exhausted and not from anything I did. I felt so incredibly miserable when I saw my mom. She was truly distraught. She had contacted the police (obviously) who had told her I had probably just been having fun. The worst part of the whole thing was that this wouldn’t be the last time hypersomnia would cause me to scare or disappoint someone I loved…it wouldn’t even be the last time I did it to my mom. I slept through Thanksgiving when it was just the two of us and she was waiting for my call.

Hypersomnia is letting people down. It’s missing out on life. It’s sleeping through classes and exams and not being able to tell your professors what’s going on because they won’t understand and when you’ve tried in the past to be open and honest it’s backfired. Hypersomnia is depression, anxiety, stigma and people being afraid to talk about those things because maybe they’re afraid of being mentally ill and further marginalized by the medical community (and maybe there’s some internalized ableism there, too). It’s sleeping through your cat’s insulin…and earthquakes…and fire alarms. It’s sleeping so long that when you try and eat you get sick because your body has gone without food and water for so long. Hypersomnia is missing out on the things that matter MOST to you, the moments you can’t get back, with people who are now gone forever…and having to reconcile that with yourself and the ones who are still here. Hypersomnia is brain fog and sleep inertia. It’s having trouble telling what happened when you were asleep and what happened when you were awake (the blurring of dream and reality.) Hypersomnia is disability for some of us and impacted relationships for most.

Hypersomnia feels like going under general anesthesia. It’s like being drugged. When the feeling takes hold of you you can’t fight it. It’s like being dragged under water when you can’t swim and you’re tired of trying to pretend you can, you’ve spent so much time and energy pretending you can.

Yes, I spend my life sleeping. But… at the same time I spend my life dreaming, and a lot of the time, I spend my life dreaming of beautiful things, fantastical things, hopeful things.


Jennie Murray is the author of JourneyOfIsaJennie.Wordpress.Com where she blogs about a wide variety of issues. All views are her own.

Posted in: Share the Journey Stories, SomnusNooze

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Getting Support From a Mental Health Professional

People with hypersomnia live with the constant challenges of having a chronic condition that’s not well known and is poorly understood even by researchers. Every day, there are calculations to be made:  How am I feeling? How are my meds working – or not? What do I need to accomplish – what’s realistic?  How much can I do before sleep is likely to take over?

Plans and goals may have to change, too:  What does the future hold for me? Will my symptoms or the effectiveness of my medications change?

It can be very helpful to have a support network, but many people with hypersomnia report hurtful, dismissive attitudes from family and friends. Managing a relationship and/or raising kids presents more challenges and compromises. Some choose not to tell others about their condition, especially at their place of work, and keeping that secret is likely to be extremely stressful.

With all of these issues to cope with, it’s very understandable that people with hypersomnia, like others with a chronic condition, may sometimes feel depressed and anxious. Stress, frustration, irritability, sadness, and even anger, are not unreasonable reactions.  But if these feelings frequently interfere with or prevent your enjoyment of your waking hours, it may be time to think about making an appointment with a psychotherapist.

“If I see a therapist, does that mean I’m crazy?”
I’ve been asked this many times. Usually it’s asked in a half-joking tone, but there’s a lot of anxiety behind the question.

The truth is, all kinds of people come to therapy; many have coped very well with other difficult problems in the past and are quite “normal” (however you choose to define that!). People often decide to talk to a therapist because their usual ways of coping aren’t working well for them anymore.

If you are still wavering, consider this: if there is a way to get more support, find better ways to cope, see your problems differently, or to improve your relationships – all of which are possible in therapy – why wouldn’t you explore that? (Please note that if you are feeling hopeless and having suicidal thoughts, it’s important to reach out for treatment right away:  call one of the crisis lines listed here: http://ow.ly/MVaS305zP24 for help and referrals.)

Having a chronic condition is difficult no matter how “strong” you are. Forget “crazy” – think “smart” and take care of yourself.

“How can therapy help me? What can a therapist say to me?
The best answers to these questions come from two people with IH who have spent time in therapy.

“My whole healing began with three actions; admitting anxiety was impacting my life, calling a therapist and actually going to the appointment, and making a personal commitment to rediscover my confidence, courage and grace.”

Another says: “Having now been through CBT* [cognitive behavioral therapy]/meditation for my illness [IH], I feel strongly that all of us humans need this, especially those of us with any chronic disease (or any stressor at all, which is everyone…). These are life/coping skills that should be taught starting in childhood and reinforced at every stage of life.”

There are no guarantees, of course, that one person’s results will be exactly the same as another’s, and doing the work of therapy takes time and effort. But there is also a relief in working with an objective, skilled and caring professional therapist, to know that each hour in the therapist’s office is time devoted only to you and is a place where you can speak freely and honestly. A good therapist can help you make real and lasting positive changes.

For further reading:

The Feeling Good Handbook by Dr. David Burns, MD. One of the best and most popular books about cognitive behavioral therapy.” (see below)

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, by John Kabat-Zinn. Meditation classes are sometimes based on this book and may be available in your area.

*Cognitive behavioral therapy (CBT) is a form of therapy that is goal-oriented; it involves examining and changing your behavior and patterns of thoughts, with the guidance and coaching of a therapist specially trained in CBT. A number of clinical studies have shown CBT to be effective for many conditions, including depression and anxiety.


Diane Powell is a Licensed Clinical Social Worker who has provided psychotherapy to clients for a wide variety of issues, both in private practice and agency settings. She is currently on the Board of the Hypersomnia Foundation.

Posted in: SomnusNooze

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