Today is National Narcolepsy Awareness Day in Canada (also known as Suddenly Sleepy Saturday in the United States) and in honor of that fact we reached out to NAPS: Narcolepsy Awareness Programs and Services to request a guest post on how living with this rare sleep disorder can affect dating and sexual relationships.
Everyone deals with their own share of problems in the bedroom. Many women feel alone, because certain glossy magazines purport that achieving a stunning and satisfactory sex life is as simple as cooking bacon for your partner in lingerie. This is not the case, as many women well know. One woman has been dealing with the unique effects of her health condition on her sex life, and decided to share her story with us. Narcolepsy and sex – This goes well, well beyond being “too tired for sex“.
Narcolepsy Not So Sexy
I have Narcolepsy with Cataplexy. What this means for me, is that my body has no way of regulating sleep and wake cycles, so I am left with some pretty interesting symptoms. The 5 main symptoms of Narcolepsy with Cataplexy are:
–EDS (Excessive Daytime Sleepiness): This symptom causes an unusual amount of fatigue throughout the day and can result in sleep episodes that feel like an irresistible urge to sleep.
-Cataplexy: Thought to be REM sleep behaviour that intrudes into wakefulness, this symptom causes a complete lack of muscle tone in everywhere but my diaphragm and eyes. It is the function that paralyzes the average person during sleep to protect them from acting out their dreams. It is triggered by strong emotions such as laughter, surprise, fear, etc. (I will come back to this, as it was the main culprit in my sex life for a long time)
-Hypnagogic Hallucinations: quite simply, dreaming while you’re still awake. This symptom can cause visual, auditory and tactile hallucinations upon waking or falling asleep.
-Sleep Paralysis: this symptom occurs upon waking, and feels like a heavy weight is sitting on your chest. This symptom can be accompanied by hypnagogic hallucinations.
-Disrupted nighttime sleep: pretty self-explanatory. People with Narcolepsy have sleep that intrudes into wakefulness and wakefulness often intrudes upon sleep. Our bodies have no natural internal clock.
So there I was, a young adult in what was supposed to be my physical prime. My early twenties were straight out of a comedy of errors. I would have several episodes of cataplexy every day, which not only resulted in a huge shift in priorities but concerns for my safety (and sexual safety) as well. When I finally felt comfortable enough to share that part of myself in a relationship, it was not without its challenges.
When I met members of the opposite sex, I felt I had to disclose certain parts of myself that I wouldn’t be able to explain in the heat of the moment. There were awkward questions, of course. I had just discovered that when I was close to having an orgasm, my entire body would collapse underneath of (or even more embarrassingly on top of) my partner. I was awake for these cataplexy episodes, unable to do anything except try to look away and will my muscles to be within my control again. There were people that I knew I was never going to have sex with based on the question “If you have an episode should I keep going?”.
Then came treatment. Finally I had a medication to help get my stubborn brain into submission. The only problem was that it was a drug called Xyrem. More commonly known as GHB – gamma-hydroxybuterate, or quite simply, the date rape drug. I thought I had problems with Cataplexy! Never was I more suggestible or in a sexier mood than the time I spent on that medication. It had it’s own awkward set of questions. “Can I accidentally rape you?” “How do I know if you actually want to have sex?”. If you’re curious, the answers are “No” and “Because I said so!” respectively. Using Xyrem also meant that I was likely to fall asleep before I had the full experience of the drug’s ability to put me in the mood. (Cue another set of facepalm- worthy questions and explanations.)
If there’s one thing I’ve learned from all of this, it’s that sex can be complicated enough without having to worry about a sleep disorder as one of your bed partners. Since my time on Xyrem I have opted to use other, less expensive medications and I have found that my sex life has become significantly less embarrassing over the years.
I am now in a long-term relationship with a person who accepts me for who I am and celebrates the milestones I achieve, both in the Narcolepsy community and as an individual – separate from any disorder or diagnosis.