My recent diagnosis of narcolepsy has me re-framing my entire teenage years (it typically manifests in late childhood/early teens). I simply felt as if I was struggling constantly. I couldn't figure out how my classmates finished their work and didn't appear miserable and exhausted. I thought they were better at hiding how overwhelmed they were than I was. Turns out, they were probably no where near as overwhelmed as I was. Written work and projects is where I struggled, tests were easy. Tests were fast and made the adrenaline pump, keeping me awake. However, staring at a computer, quoting books took me an incredibly long time. I would get lost in a thought, or find myself staring off into space and minutes had passed. The last sentence I wrote or typed, not really making sense. In the narcolepsy community this is called "microsleeping" or "automatic behaviour" where we fall asleep doing boring or repetitive tasks, however our eyes are open and we are often trying to complete these tasks. My mother couldn't fathom why such a brilliant child (high 90s on tests) was getting 70 or less in her classes. She chalked it up to the same thing I had. I was lazy. I often pep-talked myself into doing things or worse, shamed myself into doing them. My flawed lazy personality hung over me like a dark cloud. At one point I was having headaches and sleeping in the office sick room daily, my doctor put me on antidepressants and asked my mother to not put so much pressure on me to have good grades. In the 90s narcolepsy was even more under diagnosed than now, he did not think to test me for a sleep disorder.
My room was always messy, I had a very hard time balancing school, social and life needs. Social usually won out because it meant being excited and stimulated, AWAKE. I began drinking coffee regularly at 16. Sometimes I could even keep up with all of my work. At the age of 17, after many stressful occurrences I turned to amphetamines as an escape. Really though, it felt like life got easier. My projects were getting done, I had time to write, be creative and social. unfortunately though, they take their toll on one's appetite and I was becoming an unhealthy size. I decided to quit, after over 6 months of regular use. I felt anxious and jittery for a day, then slept for 24 hours. I drank an extra coffee a day to try to recover my energy (3 a day now), and that was it. Kicking a habit that still plagues some of my friends to this day was fairly easy. I have since learned that a common treatment for narcolepsy is amphetamines during the day, everyday. I was self-treating not even knowing it. Like Dr. Gabor Mate has often theorized, many drug users are in fact treating an underlying illness, physical or mental health-wise.
As an adult, my forgetfulness has always annoyed me. Appointments, regular tasks, names etc. Things I knew better than to forget. I have learned to write things down right away, or else suffer the consequences, my forearm being the most common place. I can't lose that now can I?
I felt like I was letting everyone down if I made it a sandwich and carrot stick dinner night because I was too tired to make dinner, or if I couldn't bring the kids somewhere they wanted to go, because I was suddenly and inexplicably exhausted.
I was watching Grey's Anatomy, and Dr. Meredith Grey said to one of her patience: "It's not supposed to be this hard." when referring to a patient's life. I related to that that sentence. I felt it deep in my chest, unlocking all of my pent-up shame for simply not cutting it, for not being where I wanted to be in life. I knew the truth of it right there. My life should not be this hard, something is wrong and it's not with who I am as a person. Two weeks later, I got my diagnosis and that reaffirmed it for me.
To those of you constantly overwhelmed and blaming your personal flaws, keep looking for answers outside of your self blame:
It's not supposed to be this hard.