My name is Nicole C and I was finally diagnosed in 2015 having narcolepsy with cataplexy. I currently am a licensed mental health counselor and managed to get my undergrad and masters degree without treatment. I survived on 5 hour energy shots and caffeine pills… whuch ultimately caused me more problems. I cannot express enough how much my career means to me. I am so close to getting my LCPC license as I have completed my 2 years under supervision as a LPC.
I am driven to advocate and help my fellow flawed, fragile, and perfectly imperfect humans. it’s okay to not be okay. The struggle is real.
However, need some guidance. I have been able to hide my symptoms for years working at my hospital. But now I can’t hide it as well. I notified my work about my narcolepsy upon hiring me and that I have been prescribed two 15 minute naps a day. I take medication sometimes 3 times a day to stay awake.
Now, I don’t want any special attention because in my world…the tall blade of grass gets cut first. I do try to fit in a 8-15 min nap in the middle of my day cause my medication stops working around 1ish like clockwork. I have always been able to do my work well even if I do get symptomatic when I’m writing my group notes. I work through it and persevere.
Well last Thursday I was originally called off of work and Wednesday night I stayed up late that evening and went to bed half awake and missed taking my night meds (rarely happens, I got them ready to take but I’m pretty positive I fell asleep before injesting them). So I didn’t get any REM sleep because my brain doesn’t allow it at night.
I ended up getting called into work on Thursday (my day off) and felt fine going into work. Even after took my adderall meds at 7am and at 1pm, I still ended up having 2 sleep attacks at work (first at 2pm and second at 530pm). Both lasted 20 minutes. Because I still had groups to run, I didnt take a nap after first attack. I felt completely fine once it passed and continued with my work.
After my groups were finished, I still got all my paperwork done through the struggle (fan in face, music playing, hitting leg, moving around, and standing while typing).
At the end of my shift is when the second sleep attack happened at 530 and the symptoms were wayy worse. It was like I took 3 benadryl and it all hit me at once in the most inconvenient time. The patients at the hospital didn’t see it so no harm was done to them. But it was nonetheless humiliating.
I was acting panicked and presented as disorganised, mildly delusional, slurred speech, micro sleeps, and catapletic. This concerned some of the staff who do not know about narcolepsy and they verbalized their concerns to upper management.
Ive worked at this mental health hospital for 2 years and never had any write ups, complaints, concerns, or issues with my work. I find time to fit in my naps when I can. Some days it’s harder to do. I am a PRN which means I’m part time with no benefits. I also work at an outpatient group practice where I see Individal clients once a week.
I am now being put on forced medical leave without pay for a “week” and am required to provide a letter from my doctor medically clearing me to return to work. This was an isolated incident. I have had shady issues wirh my work in the past and worry when Monday rolls around they will give another excuse why I can’t return to work.
My question to you is, how do I go about being apart of the Americans with Disabilities act? Do I get that through my doctor? I just want to be sure my work doesn’t fire me or “push me out” because I have this disorder. It would devastate me.
I already don’t have a very good social life. I’ve been single for 9 years and I am actively working hard every day to maintain a positive self perception. I see a therapist, have a Support group, am on the right meds, and advocate for myself. It’s just hard to feel empowered when your apt to fall asleep in mid conversation, look drugged up when catapletic, have difficulty reading a book, have moments of increased confusion, you ask to take a nap during a party or family gathering, nod off while eating dinner on a first date, or you completely forget your thoughts or what you were saying mid conversation. Especially being a therapist, its most difficult for me when the sleepiness comes mid session. I feel alot of guilt and shame because I have Narcolepsy. It is what it is.
I’m 28 years old and I refuse to allow my narcolepsy to take my career away from me. I have worked too damn hard to get where I am in my life today. I am blessed because I dont go to work, I get to go to my life. My career gives me purpose…without that, I am lost.
My biggest fear is happening.
This disorder taking me away from my life. My passion. My purpose.
I’ve had my pity party already and now I’m in problem solving mode. This just sucks. It was an isolated incident. Even being on my medication I couldnt prevent the attack from happening. It was humiliating. But my quality of work was still great and I got all the paperwork completed.
Some guidance would be helpful. I just want to protect myself from a business world that I feel lacks compassion to those who have invisible complex disorders.
I already know what accommodations I would request for the ADA act.
I don’t need the FLMA because I don’t need time off for my narcolepsy. Or at least I haven’t in the past.
Also should I speak with an employment lawyer for consultation?
Goodness…my efforts to be "short and to the point " failed miserably. That’s my ADHD and early morning meds kicking in for yah!
Looking forward to the feedback!