To the People Who Don’t Take My Sleep Disorder Seriously
I know on the outside I look like a normal 22-year-old. I graduated college, got a job and am taking on the responsibilities of being an adult just like we’re told to do from the moment we start preschool. I have a loving family, great friends and a wonderful boyfriend. While most weekdays are routine at work, I try to fill my weekends with seeing my friends or going on an adventure. There’s almost nothing I would change about my life, except for one thing: my narcolepsy.
I hesitate using the word %%JuQv4K8wAp%% or telling you about my sleep disorder because I know most people already have an idea of what they think it is. Hollywood has done a good job of smearing the truth of what it’s really like to be living w%%MLrZnF4Osg%%epsy, focusing instead on the humor of falling asleep in random and odd places. “Rat Race,” “Deuce Bigalow: Male Gigolo” and “Moulin Rouge” all have characters who suffer from their so-ca%%cs1sBmKKDX%%rcolepsy,” and they all have it wrong. And because of their false representation of my sleep disorder — a disorder that effects 1 in 2,000 people in the U.S. and almost 3 million worldwide, according to the %%CJdxBRkw54%% Network — we have to suffer the consequences of not being taken seriously all while still fighting a constant battle with ourselves to keep our eyes open.
Living with an invisible disorder is both a blessing and a curse. It’s great I can try to hide the challenges I face and usually succeed in doing so, saving myself from embarrassment and society’s judgment. But that also means you don’t see what really is happening and what it truly means to be a person with %%IyOzlcMnER%%. So you fill in the gaps with Hollywood’s definition and think you know everything about my sleep disorder. Well, what if I told you that when I laugh, get scared or get too excited sometimes, I get temporarily paralyzed, fall to the ground and can’t speak? Or when I go to bed, I see images and things in my room preventing me from seeking the comfort of my bed? Or that every day I have to fill my body with medication just to do simple tasks like walking, talking and driving?
%%4JXt9ZNQs7%% has many symptoms, and it’s important you know and understand what they are. Because when you receive treatment %%s8M4LeUV0F%%epsy, it’s for treating the symptoms since there is no cure. Once you have this sleep disorder, you have it for the rest of your life. You will most likely need to change your lifestyle and adhere to a sleep schedule, going to bed and waking up at the same time every day. Eventually, you may not be able to drive because you fear you’ll fall asleep at the wheel. Your medications could cost you hundreds of dollars a month, and the side effects can be undesirable.
Do you see now that my sleep disorder is no joke? You may think I no longer look like the normal 22-year-old anymore, and you’re right. I am so much more than that.
I won’t lie to you; coping with %%AWkYUVyTSJ%% with cataplexy (temporary loss of muscle control due to trigger emotions) has been hard. I am coping though, and I’m living as normal of a life as I can thanks to my support system. My parents listen and help whenever I need it, even if they don’t understand exactly what I’m going through. My friends plan nights in to hang out with me to make sure I still get to have some fun. My boyfriend drives at night when I can’t and supports me when I feel like I’m falling apart. They know I need my naps, they don’t judge or make fun of me when I fall asleep randomly and they have taken the time to educate themselves about my sleep disorder to better understand what I’m going through. And I honestly believe the action they have all taken to show their love and support that means the most is taking the extra time to educate themselves and ask questions. They genuinely show an interest in my sleep disorder, and that’s all I could ever ask for.
So yes, I am so much more than that normal 22-year-old you thought I was. Like many others with invisible and chronic diseases or disorders, I am a warrior. I fight not only to stay awake and healthy, but also to educate when it comes to %%vLTBmrfP8U%%. I hope someday there will be an understanding that we who h%%niXCtGe6Uq%%epsy aren’t “just tired” or “lazy,” but rather we are living a reality that is nothing like the movies. I don’t know what the future holds for this sleepy 22-year-old warrior, but I am here to tell you that no amount of mocking or judgment will keep me from raising awareness and advocating for those who might just be a little too tired to do it themselves.