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Living with Narcolepsy

Narcolepsy at work: yes to ADA?


#1

Hello,

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!

Sincerely,
Msnicole39


#2

You may want to start research here: https://askjan.org/media/Sleep.html

Sleeping disorders in and of themselves aren’t specific to ADA but depending on numerous factors your situation may be covered. You’ve going to need clear, detailed documentation.

You’re gong to need medical documentation that includes the following:
A formal diagnosis
Frequency and duration of symptoms
Persistence of symptoms even when following prescribed treatments
Severe disruption of your ability to function due to symptoms

You’re also going to want to pull together specific tests you’ve had and any labs:

Diagnostic tests, like EEGs, sleep studies and other exams that also rule out other medical conditions
Medications you take and their affect on your symptoms as well as any side effects they cause
Other therapies that you’ve been prescribed, like a strict napping schedule for decreasing narcolepsy symptoms
Physician notes on your functional capacity, including any decreases in daily productivity or inability to complete certain tasks because of muscle weakness or drowsiness
Detailed statements from your doctor(s) reporting your condition, symptoms, outlook and overall status

It sounds like you work for a large employer? If so, talk to your HR rep for more info. In my experience large employers are willing to work with ADA issues without too much fuss as long as you have all your ducks in a row.

azurelle


#3

Thanks! I’m meeting my supervisor and HR tomorrow. If something comes up that is concerning I’m gonna update you. I was confused about th3 ADA I guess becsuse my hospital is already covered under them. I was told I only need to contact or involve the ADA if I feel I need to make a formal complaint.


#4

It sounds to me like you are on the right track and you have the answers to your own question. All you needed was a voice that was not your own to tell you it’s going to work out. Look at what you wrote and break it down. You know exactly who you need to talk with. You also know that you did absolutely nothing wrong as to where your work is concerned, so it shouldn’t be in question. But above all that you understand your narcolepsy and what went wrong to set it off. You have absolutely nothing to be ashamed of. People around you that decide to be insensitive to others and to things they don’t quite understand. Are the one’s that should feel saddened, ashamed and upset. By the way they reacted to the situation. Like I tell my kid’s and my team members. (There is a way to act and a way not to. There is also a way to respond to a situation and there is a way not to. You have the choice, no one else has it for you.) I hope that helps. Your friend, Rachel.

One day at a time and one step at a time.


#5

I’m panicking guys. My work has not put me back on schedule, I found out from my co-workers thst they are having other employees (all of whom do not have a disability) covering my shifts. My work tells me I’m off due to low census. I met with an attorney yesterday who feels i have something to work with regarding discrimination under ADA. But he recommends that our first step is he write my HR department describing situation and asking for compromise that they put me back on the schedule or else there will be consequences.

Now I have to let you all know my work has thrown me under the bus several times during my 2 years there. I work as a PRN which means I’m not.gusrenteed any hours and am there as needed. But during the past 2 years I have regularly worked 3-4 days a week. Some weeks especially during the summer are slower and I’ll get called off and may work 1 or 2 days. But that doesn’t last long.
If I had him write this letter. I fear my work will retaliate and only give me one day a week. Micro manage everything I do and find silly reasons to write me up. They will treat me differently. And damage my professional reputation.
My lawyer says it’s important I write the letter so if I do pursue suit, my hospital can’t come back and sayI never xomplained they were acting discriminatory…
I don’t like this at all. I feel like I’m drowning in hurt. I don’t want to be a victim. But if I didn’t fight them back I would forever be one. I am a great therapist and have always worked hard. I just don’t want to be pushed out because I love what I do but I also don’t want to woek somewhere that sees me as a threat… I don’t know what to do. Should I just walk away and look elsewhere… Is this a battle worth fighting?


#6

Ok. Let me think how to word this. Just know some where in the middle it may go in a circle. Alright, life is not easy and when you feel like you are not strong. That’s when you really learn how strong you are. You may not always like where you are. But you are there for a reason. You may be a smile that someone needs or you may need to go through something only life can teach. To later help someone else. As to if this is a fight you should fight? Only you can truly answer that. You are the one living in your moments and you are the one that knows who’s lives you are touch in your day to day. So, set down with yourself and have a heart to heart. Listen to the advice that has been given to you. But realize it’s just that advice. Don’t take to long deciding what to do. Also remember that sometimes doing the right thing is hard to do and will scare you tell you take back your power. That’s remembering you are stronger than anyone one you work with that doesn’t have narcolepsy or something else. That makes their own body turn on them. Where they can’t control what happens or when it happens. Remember you are a fighter just like all of us and you are much stronger than you think. Even on your bad days if you are awake for 10minutes wow! Way to go! Hope this helps.
Your friend, Rachel.
One day at a time and one step at a time.


#7

Something I think that may also help is a book I have been slowly reading. And I do mean slowly. One cause every word hits me in some way and I break down what it means to me for like a week. Two I get busy with work and family. That I don’t pick it back up tell I remember it’s in my bag. So, the name of the book is “Never Give Up - You’re Stronger Than You Think. By John Mason”

Your friend, Rachel
One day at a time and one step at a time.


#8

You’re right. I often tell the patients in my hospital and my clients that during times of adversity, we find strength inside of ourselves we didn’t know was there. I needed that reminder myself. I really appreciate your words and warmth. I’m one tough cookie and will come out of this stronger.

I hope to be an advocate for those of us who have invisible chronic disorders. I wanna eventually do a ted talk and maybe write a book on my experiences. I want to continue to inspire and be inspired. You just recharged my sparkle!

I’ll defintley get that book too. Thanks for the reccomendation.
This was super helpful. Thank goodness for this group.

I’ll keep you posted about work updates.


#9

I’m glad that I’m able to help. Remember you can’t write about personal experiences unless you go through them first. That’s the not so much fun part. But it’s the only way we learn and truly know how it feels is by going through it. Like a mom can tell a child not to touch a hot pan. But tell the child touches it do they truly understand the “why” for themselves. It’s like trying to explain the color blue. How would you describe it to someone that as never seen the color?? I hope this helps you.
Your friend, Rachel.
One day at a time and one step at a time.


#10

Oh also i forgot to include what happened during my meeting with my supervisor and HR. Its simply unbelieveable… they wrote me up a second class disiciplary report for not having my paperwork filed the same day I worked. It stated the offense was due to sheer neglect and omitted out anything that had to do with my disability. Also, what bothers me is that I have been asked to file other social workers group notes days after they ran their groups. Ive seen charts of patients who have been discharged a month or more prior with missing doctor signatures and discharge summaries.

This was a first for me and I get a second level discipline report?? I refused to sign report and hand wrote on report thst papers were not filed that day due to complications with my disability.

I Also found out my work called in a therapist who quit 5 months ago to come in and work my Sunday shift. They could have called me Into work! But they called her in for that one day.

This is just not right at all. I never anticipated this kind of treatment following a sleep attack.

Nicole-


#11

I will continue rereading your responses when I need grounding and clarity. I can get so emotionally provoked that I lose sight and need redirection.
I’m so grateful for you. Truly. Xo

If there’s no mud, theres no lotus flower. <3
We are the lotus.


#12

With them trying to take out the true facts of any issue be it with this or anything else. It’s solely based on trying to cover themselves and they quite thinking about the people involved in the issue. You did the right thing by not allowing them to get away with it. I know you said you wrote on it and wrote the why’s. My question is did you make sure to get copys of it too? That way they can’t try changing it again. Is there anyway you can call them out on others not having thire paper work in order? Or is there now no way of proving it? But either way always remember anytime you see anything that is not right. Then you need to say or do something about it. Cause hoping that someone else will do something isn’t going to work. Because it will just keep going, it’s easy not to do anything and it’s hard to do something. But it gets easier to do the right thing and to call others out to do the right thing too. I hope this helps. Your friend, Rachel.
One day at a time and one step at a time.


#13

Nicole,

In my region the health community is very insular. Everyone seems to know everyone and knows what’s happening all over the place. And I’m not even a member, I just know people, and I know this and have seen it in action.

I would say your current employer has already made it clear they will not work with you and will, in fact, make it as difficult as possible for you to work. Is it really worth fighting to be someplace that doesn’t want you there in the first place? And a place that can easily wreck your local reputation with a few well placed whispers? Is this really a fight you want to fight? Particularly since you’re not guaranteed hours and have been cut from the schedule before.

I want to tell you to get out while the getting is good and while your reputation is intact. There’s always a another job, there is not another reputation. It sounds like your employer is already building a case against you for dismissal anyway. If I were you I would go along to get along and start seriously looking for different work.

azurelle


#14

I hear what your saying. And I do see that my work clearly doesn’t want me back. I have already tried to see if i could work in outpatient to help and am still not being called in. I am considering pursuing a discrimination case and am aware of what the potential consequences are. I feel that if I don’t, I will forever be fearful ever getting symptomatic and having anyone notice it. I will start existing and not living because of the persistent anxiety and shame. I believe in my heart what they are doing is wrong. I am a good therapist, all I wanted to do is work and help the public. They see me as an issue and its not okay for them to not put me on schedule while other staff are working good hours.
I keep getting reminded in my life that during times of adversity, I find strength in me that I didn’t know was there. I am just proud of myself for seeking different professional opinions at this time. I have already met with one attorney, I have a meeting with the EEOC next Friday, and have an over the phone consultation with another employment law firm next week.

This will only steer me in the right direction.


#15

I absolutely received a copy of it. I have compiled my own collection of evidence over the past 2 years of things I found I disagreed with. Also to protect myself if needed.


#16

Way to go! You are on the right track and you know how you need to handel this. You are doing a awesome job standing tall. Keep it going one step at a time.
Your friend, Rachel.

One day at a time and one step at a time.