13 replies to this topic

[sweetorientaldream]

Newly diagnosed here. A little less than a month ago - June 15th. What I didn't realise is my coworkers and friends have been talking about me for a long time. Friends stopped inviting me to parties and activities because I would always fall asleep. I would also be napping when friends would come to pick me up. It got old to them, I know. Coworkers at work would accuse me of too much drinking because of my age, just turned 24. I haven't drank in so long though! Finally a coworker, a 57 year old lady whom I've known for a long time, encouraged me to go see a doctor. She is a very kool person, and a good friend. She herself suffers from anxiety, panic attacks, insomnia, pain etc. She's had more health issues that I can type about. She told me she knows I don't party and the quality of my life sucks. I just work, go college (barely can stay awake in classes) and stay home to be close to my bed/couch. She suggested I see her psychiatrist maybe it's depression? I was fighting against it, I know I don't have any depression or mental disorders. Finally I gave in, she told me new managers will not be understanding when they find me sleeping in the back office every, single day! Even if the naps are 10-15 minutes, they make me look bad. I started with my GP and was referred to my neuro/sleep specialist who also has a psychiatry degree. I was finally diagnosed with sever N.

People have realised I changed. I don't fall asleep at work anymore, or not so often. Between my sleep attacks I was kind of sharp with people and it was hard to focus on anything. Now I am more mellow, calm and awake. I can finish my tasks. Also I quit drinking coffee (it never helped before, I looked more weird at work when drinking 5 cups and falling asleep afterwards, but at least it felt like I was constantly trying to stay awake). Dexedrine itself doesn't make my heart race or raise my bp, but when taken with coffee shoots my bp through the roof! From 120/80 to 140/95!! I stopped drinking colas and sodas. I drink water to hydrate myself. I try to eat healthier, and I did not lose my apetite. However I realise it is a stimulant medication, and when combined with water and healthy food my bp stays the same, but when taken with lots of caffeine it raises my bp and I am not liking that. At the age 24 the last thing I need is to run into bp problems! I exercise (not that I need it. I weigh about 105 lbs) but I want to stay healthy. People see these things.

I don't know why but it seems somewhat embarassing or I don't know to tell people that I am kept on amphetamine. There is just so much stigma to it!But friends and coworkers keep asking me why such a change? I just can't seem to be able to open my mouth and say: "I was diagnosed with narcolepsy, now I am taking Dexedrine daily". Not so many people are familiar with stimulant use and narcolepsy itself. They maybe are familiar with adolescents abusing meth or street speed - but they don't realise it's not always the case.

Bottom line is I just don't want too many people to know, I don't know why. I am not embarassed myself but I am not sure if people would start talking bad about me. So what do I do?

[Sleepless in Ohio]

I felt the same at first, then I found out the few people that knew about it had weird ideas as to what Narcolepsy really is. So now I tell most of the people in my life and try to educate them as to the true nature of this condition. The first thing most people ask is "can you still drive?" Now I have only had one ticket in my entire driving career. (I am fifty and have been driving since I was fifteen) so yes, I still drive, quite well, thank you.

So I say "Tell everyone, let them know N is not some goofy thing that keeps you from living.

D

[TiredAgain]

Maybe it is because of your age, because I am 47 and when I found out I couldn't wait to tell people. I called my family & friends and told them that they needed to apologize to me for calling me lazy for all of these years. I don't mind people knowing so when I get tired and I some times get brain fog they will maybe understand, of course there are still uneducated people that think if I just ate better or worked out more it would all go away. I'm on two meds Adderal in the am and Provigil in the afternoon and I still get sleep attacks.
Good Luck and just do what you feel is right.

[Sleepy Head]

Congratulations on finally knowing what is wrong- that you aren't crazy for always being tired! I remember when I got diagnosed, I made my husband, whom I've been with since I was 15 (31 now) apologize for getting irritated with me for all these years- and of course I cried with relief!

I told my family because I wanted them to know why when we visited, I slept. I told my friends and co-workers because 1) they give me support and 2) I needed to tell people to be able to educate them. Most of the people I told always asked, "Do you fall asleep and your head go into your food at night?" I reassured them that was how the movies portray the disorder .

I just had a second child and it was very difficult. I had to stop driving and I kept having episodes that were increasing on a daily basis. I had to explain it to co-workers so they'd understand that if they see me with my head rolling; they'd know that I was having an espoisode. However, one reason that I think it is important to tell them is that I developed cataplexy during my pregnancy, and they needed to be aware in case I fell. And the second reason, which is actually funny, I would have an episode while writing an email and 'accidently' send it and then had to explain that the reason that the email didn't make sense was because of my "problem."

Everyone I've come into contact with has been so supportive and understanding and willing to help however they could.
Tell them is my recommendation. Good Luck!

[tdmom]

its bittersweet finally having a diagnosis isn't it? - nice to know you aren't crazy, lazy, apathetic but hard to know you have a lifelong, albeit treatable illness.

I don't know why but it seems somewhat embarassing or I don't know to tell people that I am kept on amphetamine. There is just so much stigma to it!But friends and coworkers keep asking me why such a change? I just can't seem to be able to open my mouth and say: "I was diagnosed with narcolepsy, now I am taking Dexedrine daily". Not so many people are familiar with stimulant use and narcolepsy itself. They maybe are familiar with adolescents abusing meth or street speed - but they don't realise it's not always the case.

Bottom line is I just don't want too many people to know, I don't know why. I am not embarassed myself but I am not sure if people would start talking bad about me. So what do I do?

I have 2 comments however. Do not feel that you HAVE to tell everyone you know, and, should you choose to tell them you absolutely do not HAVE to tell them what you are being treated with. There are different medications that treat narcolepsy and people seem to be on different ones, whether its because they didn't tolerate one, insurance won't cover a specific medication etc. It is perfectly ok to say to those you feel must know "I have Narcolepsy. I am under the care of a neurologist." And then discuss the medication that you are with those who must know or with whom you feel comfortable discussing the medications. The medications you are on may change over time and certainly it is up to you to decide who needs to know what you are on at any given time.

[merrymom1013]

I agree. Your specific medication may change and is not necessary to share. You don't need to share more information than you are comfortable with. It is enough to acknowledge that you are feeling so much better because you've gotten the right care for your medical issues. If the questions are beyond your comfort level, simply tell your coworkers that it's personal or change the subject.

[Niki V.]

I too am newly diagnosed with Narcolepsy. I have a hard time telling people because they just don't understand what it is or how it changes our lives.

I work in the medical field and still don't have the understanding from some of my co-workers. They just regard it as a joke. They see me buzzing around all day working like crazy at a non-stop speed but what they don't see is that when I get home I crash and sleep until I have to go back to work the next day. Then I sleep my weekends away. I decided to do something about it and see a Dr. and be put on meds for myself and my family. I didn't want my daughters only memories of me to be of me sleeping all the time! I was missing out on my family life. Before the meds I was only awake for work and now I have time for my family, which I am loving!!! So they can take my joke and laugh all day because it is the best thing I have done for me and my family.

I don't tell too many people about my Narcolepsy, but the ones I do, I try to educate them on what it is and how it affects my life and my family. I am not allowed to drive unless I am on my meds, so it is a life of meds and my husband driving me around! But at least I am living!!!!

[narcshark]

I agree with MerryMom. I think it's fine to say something along the lines of "I was recently diagnosed with a non-contagious auto-immune condition by my neurologist. That's what was causing all of my tiredness. Since being diagnosed and treated, I'm feeling much better. Thanks for asking". If they ask lots of questions, you can either change the subject, or give them another true but ridiculous statement, something along the lines of "it results from a depletion of the orexin cells in my hypothalamus, but now that I'm treated, I'm back to my old self". Kinda sounds like you took a round of antibiotics and all is well...lol

Of course, if you think that they are capable of understanding N and not judging you about it, then feel free to tell them and educate them about it. That's what I did at work. I'm glad that I did, but there have been consequences of that, such as a demotion of job duties (but not pay, thankfully) and accusations at times when something is misfiled, etc. even when it wasn't me... "you must have been sleeping". On a positive note, I feel somewhat like an ambassador for sleep issues at work, and I like it when my colleagues come to me and ask questions and I am able to share knowledge about N without feeling ashamed of it.

[whitney037]

I tell people when it is relevant. I told a lot of friends and family members after diagnosis because I was so excited to explain that they are not boring, I just have something wrong with my head lol. Many of my friends and family were not surprised and told me that they thought everything added up. I usually only tell people now if they ask about it or when something about sleep problems comes up. I always feel weird though like a lot of people don't understand it enough to tell them. Sometimes people react like they think I'm going to fall asleep at any time and they have to be on the look out for it. Some of my coworkers know, it has come up why I take pills at work and why I drink 6,000 bottles of water (outrageous thirst-Ritalin).

[mestisa]

Newly diagnosed. I am afraid to tell co-workers because so many people do not really understand N. and then they have the tendency to label you. They also see your abilities differently once you have the N. attached to you. And there are the effects of the medications. I know people have gotten mad at me for things that N. has caused, like staring (sleeping) and misinterpreting that behavior. It is a real conundrum. Damned if you do and damned if you don't tell.

[Adzb]

Newly diagnosed. I am afraid to tell co-workers because so many people do not really understand N. and then they have the tendency to label you. They also see your abilities differently once you have the N. attached to you. And there are the effects of the medications. I know people have gotten mad at me for things that N. has caused, like staring (sleeping) and misinterpreting that behavior. It is a real conundrum. Damned if you do and damned if you don't tell.

I bit the bullet and did. I work a rotating shift pattern as I found I am better at staying awake during the night. (Strange, I know) It works for me, as on the day shift my work colleges look out for me and i do the same for them on the nights. Like covering while they go for extra breaks. They find it amusing, and i think they are happy i finally got it sorted. Also, they stop panicking when I have a C attack.
Nobody is perfect and 9 times out of 10 your colleges have problems too. Being open may help others to be open.

[SuperJames]

I don't tell anybody (except y'all ). Nobody! Where I live, folks are very suspicious/superstitious...

[Sisu]

I tell coworkers- a few- that I have neurological damage from an autoimmune disorder.

I don't tell them which medications I take.

I tell friends about the narcolepsy. I don't usually tell them which medications I take.

They don't need to know. They need to know that I have a condition, that it is controlled, and that I'm okay.

My friends, they need to know the N-word, because they will share it without damaging my professional reputation. I don't want to be an example at work of anything but myself at work. But I'm older (mid-thirties) so it's a little different for me.

I go to school, too. I tell people I'm on teams with, in case something comes up and I can't make it to an event. But I don't advertise it; everyone's life is different. Find the balance right for you and be okay with it.

[Kayra]

Newly diagnosed. I am afraid to tell co-workers because so many people do not really understand N. and then they have the tendency to label you. They also see your abilities differently once you have the N. attached to you. And there are the effects of the medications. I know people have gotten mad at me for things that N. has caused, like staring (sleeping) and misinterpreting that behavior. It is a real conundrum. Damned if you do and damned if you don't tell.

I so happened to tell my boss I had N once, it was right after I was diagnosed and worked there after that she always had problems with me working and I eventually had to quit. This was the first time in my entire life I've ever had anyone complain about my working. I've worked plenty of other places, one place for 3 years considering I'm only 20 and this happened back in September. I received the diagnosis then and Also tried telling people such as family and some friends. I remember the first friend I told, she just said "oh we already knew that" So telling people I'd say is kind of tough. If you're in school though be sure to tell your teachers and get in on disability. Someone tried failing me week 2 for sleeping through his class. My main point is that some people will totally understand and others will not so it's a bit of a tricky game to figure out who to tell. People you tell who still don't get it can be extremely frustrating.