For years now, I have been open and honest about my ongoing struggles with mental health and recovery from an eating disorder. I continue to visit a therapist multiple times each month. I’m familiar with the process of sharing my inner thoughts and tendencies, even with the public. It’s relatively easy to be vocal about a misunderstood disorder when you are actively recovering from it. Less simple, however, is the process of sharing the intricacies of a disorder that leaves one entirely powerless.
I am 25 years old and I suffer from a rare condition called Idiopathic Hypersomnia (IH, for short). When I first went to my physician about my excessive daytime sleepiness, she told me I was overweight and that I should try to get a full 8 hours of sleep each night. As it turns out, my tiredness had nothing to do with second servings of pasta or late nights at the bars. It was, however, a slowly developing neurological sleep disorder.
I’ve never been a morning person. Two cups of coffee is my minimum prior to productivity. But somewhere along the road, things shifted. Grogginess became overwhelming and persistent sleepiness. I began to struggle to stay awake doing even the most simple of tasks. My “sleep attacks” would hit at dangerous times, like when I was driving to work or standing in the shower. It was embarrassing and didn’t make sense to me. After years of abusing my body with symptoms of anorexia and bulimia, I was finally stable in recovery– This was truly the healthiest that my body had EVER been in my adult life. So why was daily life STILL such a struggle? I never imagined that one day I’d wake up with a medical condition that was incurable. It took a few years and half a dozen different doctors, but I finally got my concrete answer: Idiopathic Hypersomnia.
I want you to think back to the last time you were sleep-deprived. Whether it was due to a late-night concert or an all-nighter studying for exams, I bet you’ll remember that distinct zombie-like feeling that ensued. Now I want you to imagine feeling like that ALL day, every day. As someone who suffers from IH, it does not matter how many hours of uninterrupted sleep I get each night…I will never wake up feeling refreshed or well-rested. The average person, in fact, would have to stay awake for 48 full hours in order to feel the level of exhaustion that plagues my day-to-day life.
I have a wonderfully knowledgeable doctor now, but even the heavy stimulants she prescribes leave me living in a fog (and as simply a band-aid, they truly don’t address the root cause of the condition). Every day with IH drags on for centuries, yet I look back and can’t quite recall what I’ve spent all of my time doing. The hardest parts of the day are mornings, when I suffer from what is commonly known as “sleep drunkenness”. I am known to sleep through more than six different alarms before coming to the groggy realization that it’s time to get up. I can sleep surrounded by sunlight or artificial light without any problem. Awakening is not any easier if I go to bed earlier, nor can I function better if I sleep in a cool room with the windows open. As you might imagine, many people with Idiopathic Hypersomnia have trouble holding down jobs.
To make the excessive sleepiness even more difficult to deal with, there is rarely a coherent pattern in which it occurs. Some days, the sleepiness hits midday at work. Other times, I power through the workday only to crash immediately at 5pm upon hitting the plush cushions of my couch. It may sound luxurious — all those extra naps and no trouble falling asleep at night — but let me promise you, it leaves much to be desired. It’s debilitating. I’ve overslept through important workshops, family dinners, and morning workouts. I’ve missed plans with friends and have had days where I simply don’t have enough energy to empty the dishwasher, let alone socialize or put on “real” clothes. As a high-functioning individual who also suffers from anxiety, this is truly a nightmare for me. My Idiopathic Hypersomnia leaves me unproductive and stripped of momentum, while my anxiety constantly fuels my brain with whispers of “do more” and “do better”.
I’ve spent night after night crying because of this disorder. It truly leaves me without hope some days, especially knowing that there is no cure. I am fully aware of the fact that my IH symptoms come across as laziness to many people. The only thing I can do, at this point, is attempt to educate people so that this condition is better understood within society.
I don’t share this information to seek pity, nor do I need you to “solve” my puzzle of a condition. While, I have your attention, though, I do have a few simple requests to make of you:
- Don’t complain about how tired you are. Chances are, you don’t even understand what it feels like to truly be sleep deprived and barely functioning.
- Don’t give me suggestions. My chronic illness cannot be solved with your herbal supplement, workout advice, or nutritional feedback.
- Don’t stop inviting me to things. I know it may seem like I don’t care enough to show up, but please understand that there is so much more to the story than you’ve seen.
- Educate yourself on spoon theory. Chronic illness is real and is more common than you may realize.
- Resist the simplicity of labeling me as “lazy” or “always tired” or “unmotivated”.
It’s disheartening to know that I’m in my mid-twenties…supposedly the prime of my life…yet, I somehow don’t have the desire to do anything but sleep. My mind is motivated, but my body is incapable of following through. I’m still slowly working through the intricacies of this diagnosis and what it means for my future. But in the effort of full transparency and therapeutic writing, I wanted to share this journey with you all.