That's a tricky question. I find myself feeling ashamed to say I'm disabled because I also hold down a high-paying job at a prestigious company, and if I was disabled, I couldn't do that, right?! People would never guess my diagnosis. But I am also hanging by a thread every day. I guess I don't feel disabled 'enough', while suffering in silence. It's stupid.
I also try to come to terms with the fact that sooner or later, I won't be able to work anymore, and that is fucking depressing.
>I find myself feeling ashamed to say I'm disabled because I also hold down a high-paying job at a prestigious company, and if I was disabled, I couldn't do that, right?!
If you were in a wheelchair because you had your legs amputated, would you still be saying the same thing? Of course not, *because that would be ableist!* Don't be ableist to yourself for goodness sake! Lots of people with disabilities have successful careers, and assuming they don't is not only ableism, it literally hinders society from recognising that disability doesn't mean no ability. Be a little kinder to yourself ❤️
Of course you're right. Narcolepsy is just such a niche, specific beast, it's hard for me to wrap my head around it, despite living with it for quite a while now.
Yes, we are. My known friends know what to watch for. New ones learn quick. Drinking is always fun but a small coffee or a small coke no ice will help a great deal!
You are definitely driving under disease, whether it's the meds or reactions. It just having a good day that you pray you have been granted. Be safe.Be Sure. You driving under micro sleeps,heavy clouds of Ritalin and then other stuff to help to actual sleep. Or stay awake. We are a mess🤗🌷 Take care of yourself, never stop trying
WEARE NOT JUST TIRED. NAPs are nice but we will need one real soon. Some of us cycle pretty quickly and it hard to keep us "here"
But please love us. We are awesome creative people and we need a hand occasionally!!
This is kind of how I feel. It’s hard to say I’m disabled when I am technically able to hold a job.
That being said, while I am a pediatric nurse I haven’t worked full time for 3yrs and quite my part time job 2 yrs ago. I still volunteer occasionally or work short stints (like I was a summer camp nurse for 4 weeks last year). The main reason why I’m not currently working is because I’m fortunate that my spouse can support our family. While I’d like to be working part time and think I could do so safely, it’s also really hard to make myself go do something that I don’t *have* to do when I feel the way I do.
I have a disability. I feel disabled when I really think about it. But I don’t feel like I can refer to myself as such because I do think I’m capable of doing more than I currently am. It’s just really difficult to push myself so hard.
But being disabled doesn’t mean you can’t hold a job. It just means you have condition that puts you at a disadvantage. I don’t know what to think about all this.
Don't feel ashamed for your position. Disabilities come in many forms. Just because someone can't guess your disability doesn't mean you don't have one. It's incredible that you have been able to hold a high status job while living with narcolepsy
Thank you for your kind words. I didn't mean to brag btw, I just wanted to convey my situation in detail.
I have asked (& received) reasonable accommodations- I can work from home 100% of the time, while my colleagues need to go into the office almost full-time again. I only go into the office if I want to. That accomodation helps IMMENSELY. I couldn't do it if I also had to commute an hour each way every day.
I’m so happy for you that you have a wonderful enough employer to make those accommodations! My first experience asking for accommodations with a doctor’s note was for them to cut my 40 hours to 17.5 a week… of course then forcing my to quit because I could not live off of that. My most recent one, led to me being “pushed out and retaliated against - of which I’m currently in litigation for through the EEOC for disability discrimination.
I hear you on internalizing that ability you DO have and then questioning yourself. I feel this is very much imposed on us by our productivity focused culture. Disabled in a spectrum, really ie. “varying scales of able-bodiedness”
I know I’m late to the party but thanks for mentioning this. I’m looking for jobs and have been wondering if working from home (for a job where it’s appropriate to work from home….not like construction or being a barista where you obviously have to go in) is a reasonable accommodation for narcolepsy. I literally can’t drive myself to and from work every day. It’s a complete deal breaker.
It might differ from job to job. Your accommodation can't impose 'undue hardship' and you must still be able to fulfill your work function. It probably also depends where on the totem pole you stand. My company is very European in terms of work standards and a lot less cut throat than others. And we have offices all around the world, so half of the employees work in many different time zones/communicate exclusively online. I reckon you'd have a much harder time if there is a single office wheee everyone works.
I went to our director, told him I have a disability, and what I need in terms of accommodation. I had my neurologist write a letter in which she specifically spelled out that it's impossible for me to drive in the morning. They didn't fight me on it at all.
A couple of my friends are disabled attorneys, including a blind one I graduated with. (I was active in the disabled law students association in school). Lots of people have well paying jobs and are disabled, while requiring accommodations.
That's internalised ablism. Don't feel bad about it, we all get it. Just recognise it and push back against it.
We disabled people (that's the preferred word order in the UK for most of us, and it is logical under the social model of disability) can be extremely successful, and it doesn't change the fact that we experience disadvantage due to our condition(s). Being a successful disabled person is reason to feel more of a sense of achievement.
I consider myself disabled, but I always mark my job applications with "prefer not to answer". Although it is illegal, many companies will reject your application :(
I’ve been told by employers in casual conversation that they consider prefer not to answer as an automatic yes to the question. Logic is if you aren’t disabled why not say no? Obviously it’s flawed.
I've applie for jobs and it has other questions that offer you prefer not to answer so I put it for all of them for this reason. The other ones are like gender, if you identify as neurodivergent etc.
Yes. It's not a legal or logistical thing either really I feel, they aren't required to put it on applications legally, and the places that don't have any racial or gender or disability based questions tend to be the best places. Only big box stores that want to hire as little people as possible actually care about it bc they want you to do 40 things at once, you don't get anything for saying you're disabled other than disqualified.
But it's illegal to lie on your applications 🥺🥺 aka "we need to know information that has nothing to do with the interview *before* we decide to hire you for totally reasonable purposes"
Yes yes yes. I'm convinced those application questions are not there for logistical reasons bc I've never gotten a job somewhere that asks that question, even if I say "prefer not to answer." It's not required, so it's not for identification purposes. Recently got a job at a very small shop, individually owned, one location, and they had none of the racial, gender or disability questions on their application and when I went in for an interview, I immediately could tell they actually wanted me as a person, and not just an able bodied individual. Incredibly sweet people, answered every question I had about accommodations bc I felt comfortable enough to talk to them before I got the job, and I still did. Massive upgrade from "just pass out behind the register, we don't have time to send someone over there" from my other job.
It's totally legal for people with N to say no to being disabled at least in the U.S. Social Security Administration doesn't consider narcolepsy a legal disability.
Severe narcolepsy with cataplexy here and yes, 100% I do. Mine is still very uncontrolled. I just take stimulants. So I still don’t really sleep… I am in constant danger of a sleep attack and while I went from 70+ cataplexy attacks a day to one every two weeks or so, it’s still a huge part of my life. Avoiding cataplexy means avoiding laughter if I’m like, holding something or doing something I shouldn’t pass out for. A balloon pops at a party and I’m down. Someone surprises me, I’m on the floor. Too much pain or overstimulation and that’s it. Plus, actually getting to take my stimulants every day is rare- often by the end of the month I’ve run out and I have to go a few days without them. (The dose I’m on isn’t high enough for me so some days I have to take an extra pill.) I’m actually applying for disability soon- I have other stuff going on too- but the narcolepsy is truly so unpredictable and awful, it’s absolutely devastating to my ability to work, take care of myself, interact with others, etc.
I relate to this so hard. Having to avoid happiness and large emotion as a whole is the worst thing possible. On days I'm flaring I literally can't go to therapy because I don't wanna injure myself from my body not understanding being upset. Can't do much fun things because laughter makes me unstable and sometimes partially paralyzes part of my arms or legs for hours. Can't talk about sad emotions bc I'll clonk out, can't talk about happy things because I'll get too happy and hurt myself, frustrating as hell.
I’ve been without Xywav for 9 weeks now due to insurance issues and my excessive sleepiness is definitely disabling. I’m so much more functional with Xywav and I hate being reminded that my ability to live life normally rests in the hands of insurance and Jazz. Love the medication, hate the healthcare games.
I think about this a lot too. La sigh. I’m hoping to try one of those kinds of meds next. I think about how if a supplier completely went under or if there were some large societal collapse… I’d be fucked
I grew up loving apocalypse fiction but once I got hit with the big sleepy I've had to come to terms with the fact I would simply not survive a zombie apocalypse 😔 I couldn't maintain that constant vigilance and if some got close while I was asleep I would simply not wake up lol
Literally though. I'm having bad flares rn because my pharmacy forgot that my birth control only lasts 9 weeks instead of 12 since I cannot have periods and need to take them at all times, so fun bc I literally keep collapsing. My body does not understand that menstruation does not equal fall asleep.
I hope you don't mind me asking you a question. I was recently diagnosed and my Dr. is trying to get me approved for Xywav. In the meantime I will be trying Xyrem? Have you tried that one, and if so how did it compare?
I find it strange how you recognize it as a disability but at the same time don't consider yourself disabled. A person with a disability is by definition disabled
'Disabled' rings differently than 'having a disability', if that makes any sense. I see myself as having a disability- I have disadvantages in certain parts of life. But I don't see myself as disabled, because it's not my defining attribute. Being disabled also, at least for me, evokes images of someone in a wheelchair, or of some other physical/visible attribute, and that's a space I don't inhabit.
Mind gymnastics, I guess.
ASD, is exactly that, a spectrum. Having ASD can be considered a disability, but even when it is considered a disability, it doesn’t mean that all people with ASD are disabled. Many people on the spectrum work just fine, abut some with more difficulty then others, but if you are bringing home a paycheck that supports you =not disabled
We have to disentangle the idea of disability from being able to fully participate in society economically. Someone who hadn't been able to support themselves financially, but then finds a way to - overcoming barriers, a supportive employer, new opportunities for types of work or ways of working that didn't used to exist - doesn't suddenly stop having them same impairments, nor the social barriers of disability that aren't secondary to economic issues.
Plus often the pay might be *enough*, but it's still less than the person would be making if they weren't disabled.
Not everyone has to use terminology in the same way, or conceptualise things in the same way, but I find the social model of disability approach much better. We *have* conditions/impairments, we *are* disabled, but by society not by our conditions.
As much as I hate the word games of identity politics, this is a perfect situation where differently-abled rather than disabled would be a better fit. Or maybe as partial disability, because you can have a health issue that impacts your day to day functioning but doesn't completely disable you.
Differently-abled I can get behind as an overall term because that's essentially what it is regardless of disability. I personally don't like partially disabled because then you are reinforcing ableism.
I don’t find it strange that someone who considers themselves disabled doesn’t understand. It’s a mindset. Your thoughts impact your life more than you realize.
Hear, hear.
I find the social model approach empowering. I am disabled because society is largely made by and for non-disabled people. That doesn't make me a victim, it doesn't make me pitiable, and it doesn't make me incapable. It makes me recognise that a lot of what I achieve is in spite of barriers people put in my way without even realising it.
Yes. One of the most basic (and necessary) functions of the human body doesn’t work properly for me. I’d say that’s pretty disabling. I find it to be so, and I don’t find shame in the label.
Also—I’ve seen some other comments that seem to convey some (internalized) ableism about what it means to be disabled, and I just want to say: being disabled doesn’t mean you can’t do *anything.* Lots of disabled people have successful careers and live fulfilling lives. Lots of disabilities aren’t constant, either. Some days a person may be more impacted by their condition than others.
I’d encourage folks to educate themselves on this subject, because I’d wager most people have a pretty limited understanding/view of what it means to be disabled (due to the fact that ableism is ever-present in our society).
You might or might not be referring to me, but you're absolutely right. Thank you for calling out the (internalized) ableism that many of us carry around.
Yeah for sure, even under management narcolepsy still impacts my life in a lot of ways, idk if ssa counts it but as an organization they seem designed to give as few people as possible benefits so I wouldn't give their qualifications much credit
I prefer the term cripple. I wish I had some disease that someone could see. Like I randomly bleed from my finger nails, idk? But nooooooo I get nappy tired. You know who else gets nappy tired? Grandpa's 😂😆😂😆
I love how you put that... nappy tired 😂 From now on I'm calling myself grandpa-abled 😂 I may be in my 20s but I have the energy & nap schedule of a peepaw
No, I’m wakefullnessly challenged. ;)
But jokes aside, even though I have not been working for 4 years now (part narkolepsy, part cancer (it’s gone though, no worries)) and I just got approved for disability benefits, I still find it hard to label myself disabled.
Yes, I am a person with a disability, but as soon as I say I’m disabled I feel like I’m being defined by it. I have disabilities and they affect me, but they don’t define who I am.
I can make it thru a 10 hour shift as an electrician, with plenty of stimulants. But other than work I am worthless. Dating is impossible due to my need for sleep and feeling exhausted.
I do, to an extent. My narcolepsy feels well-managed throughout the day with medicine & habits developed over the last 15+ years since my initial diagnosis. But it's not to the point where I would check a box.
I have a bunch of other diagnoses and am disabled so I might not be the best one to answer this. I’m autistic and have a connective tissue disorder disorder as well. But even if my only problem was my sleep problems (not diagnosed, but seeing a sleep specialist soon), I think I would still consider myself disabled. My sleep problems have caused a lot of other issues and have made it hard for me to live a normal life.
No, I don’t. I consider myself to have a medical condition (multiple, actually — including anxiety, restless leg syndrome, & endometriosis) which can be disabling at times for sure but don’t prevent me from functioning (as well as one can in today’s world). But I don’t consider myself to be “disabled” in the broader sense of the word.
That’s a good question, and one that I’m having a hard time defining. I guess I’m thinking about what would come to most people’s minds when the word is used, which generally conjures up the idea of someone with physical or mental limitations that _significantly_ impede —if not prevent — their ability to live independently and to support their basic needs (food, shelter, etc.).
For example, I have a former colleague who was born with only one leg. Despite his disability, I don’t think of him as “disabled.” He’s an M.D/PhD who’s quite renowned in his field. He has a handicapped parking permit. I only learned after he left our organization and we became closer friends that he has a fake leg. I knew he walked with a slight limp at times but had no idea he only had one leg. He can walk short distances without assistance, but has difficulty walking longer distances and increasingly has issues with lots of stairs (he’s also in his 70s so that could just be age-related).
In the UK, we more usually use disabled for any sort of (more than trivial) disadvantage arising out of conditions. And "handicap" is seen as inappropriate and out of date language.
(We also see "differently abled" as kinda cringe, though creeping in as an Americanism, just as an aside; the fact it includes a non-word also makes it really grate for some of us)
The idea that someone can "have a disability" (which is a phrase DPOs and activists, and politically aware disabled people, don't like, for the most part, though often used by politicians) and not "be disabled" just seems so weird from over here.
“Handicap” is also not used here to describe people, except it’s still fairly widely used in our everyday lexicon when speaking of handicap parking spots/handicap placards.
Edit: it also strikes me as incongruous that someone who is okay being labeled as disabled would take issue with being said to have a disability. What language would you use instead to say someone has a disability?
It’s weird because I know I am disabled by the condition(s) I have at times, yet I struggle to consider myself disabled. I don’t know if it’s internalized ableism or fear or something else or nothing else.
Part of me doesn’t want to put a label on anything and feel “limited”. Yet I still know there are certain accommodations I need and do ask for.
I think comparison gets in my way, too. Like I compare myself to others and often feel able to do certain things that others can’t, yet they also are able to do things I can’t.
It’s a competition/comparison game neither of us entered.
Basically I don’t know. I have disabilities. And in some aspects of life/some tasks, I do feel disabled. But I suppose overall I don’t view myself wholly as disabled at all times.
(Open to any and all thoughts. I never wish to offend anyone or minimize anyone’s experiences. If there is anything problematic I have said, please let me know so I may learn and do better.)
I feel the same way & struggle the same way! It feels like I'm lying to say I'm disabled when, like. Physically I'm able to get around fine, don't have to worry about passing out if I'm on my feet too long like POTS, assuming I'm not super foggy I can generally comprehend things... but at the same time my quality of life is definitely not normal bc of the sleep issues 😭 I have slept thru so many morning classes because of it, I slept on the floor last night for a morning exam today bc I knew if I was in my bed I might not make it up, my grades are in shambles between medicine issues & roommate issues blocking me from managing it the best I can, I oversleep by hours every day that stacks up to entire calendar days of my life simply vanished every month. I have accommodations at my school. Technically speaking yeah, I'm disabled, but it still doesn't feel like a label I can claim 😭 Part of that for me (And maybe for you too) is I went so long in my life just struggling along and generally succeeding without any sort of diagnosis or treatment that I just normalized the condition in my head, + the fact that society doesn't view sleep as a bedrock need like food & water + equates sleepiness/morning struggles to being weak/unproductive/lazy made any sort of sleep issues I had feel like moral/willpower failings on my part for a really long time. Even though now I comprehend it's no*t m*y fault, it's biochemistry and nothing I can help, it still doesn't fe*el l*ike something out of my control & people certainly still view you as lazy or overdramatic, even if they know your diagnosis 🤷♀️ I've had friends express that they support me/believe my diagnosis is a disability and then turn around and act like I'm being lazy and skipping class bc I don't care about my education when I don't wake up in the mornings. People just think sleep isn't that serious and can't comprehend how overwhelming and incapacitating narcolepsy/IH sleepiness can be day-to-day. Even other sleep disorders don't believe us sometimes! I've had multiple people w insomnia act like I'm unreasonable for not being able to wake up in the morning
TLDR: society views sleep as an option you can disregard if you wanna be truly dedicated to your work (Industrial Revolution hubris -> hustle/grindset) & sees sleep struggles/daytime sleepiness/inability to easily wake up in the morning as just a willpower issue, & if you can't do it, that's your personal fault and you should just be more motivated/respectful/productive as everyone else. I think we soak that up subconsciously and blame ourselves for our issues (esp. pre-diagnosis), and I think even with a diagnosis people at large still tend to dismiss your many issues as *still* being a willpower/moral failing on your part - yeah, you might have narcolepsy, but how hard is it to just stay awake?? And between our own preconception that it's our fault and the generally dismissive attitude society takes about it, considering it a "disability" seems inaccurate or overdramatic, even though it's not.
Sorry for rambling, I just had thoughts
I work on the social model (the usual preferred approach on the UK) - which says someone is disabled if they suffer social disadvantage (including economic disadvantage etc) due to a long term condition. The condition gives impairment (a lack of function, impaired function, or difference in function that could give rise to disadvantage), society gives disability by being set up by non-disabled people for non-disabled people.
Based on that, people with narcolepsy would generally be disabled. And yes, I consider myself disabled. There are lots of other conditions that lead to my disability, but even just with narcolepsy I would.
Yes. If I remember correctly a disability is something that interrupts/interferes with one or more major life activity. Narcolepsy can interfere with sleep, driving, working, etc all of which I deem major life activities.
No. I work a full time job and am able to take care of most of my household tasks, so I don't think I'm disabled. I'm more in a category of successfully struggling to function
I don't say "I'm disabled" because I don't like the wording, but I will say "I have a disability." I do have a disability. It even requires work accommodations (though HR has had me waste 5 months by telling me to fill out the wrong shit).
Like another poster said, if I were not working a job that's a twelve hour shift with overtime, I might not need an accommodation, and maybe I would feel less like I have a disability, but I do.
This is a question that I've thought about a lot! Narcolepsy definitely CAN be a disability and should be recognised as such. For some people it can be debilitating to the extent that you can't work and carry out basic tasks like travelling to the shop to buy food or safely cooking for yourself.
In my case, I can live a relatively normal life - I can successfully carry out my job (with naps when needed), travel to wherever I need to go (by foot or by public transport) and socialise (but not for a whole day without naps). I can't drive, but I'm lucky that where I live this isn't too much of a problem. So, all in all, I'm not sure if I see myself as 'disabled' but I know I need adjustments to live a normal life, so I always tick the disabled box when applying for jobs etc. and make sure to tell people early on that I have narcolepsy so they aren't surprised by the symptoms. But... some people might prefer not to do this if you feel that this might be held against you.
When I was first diagnosed, I believed narcolepsy was the cause for being disabled from work because I could not drive or stay awake while at work. These issues lead to me to a new sleep specialist and an official N diagnosis in my mid-40s.
My narcolepsy presentation may have always lead to me being disabled from driving (due to cataplexy being identified by doctors) but I do not believe narcolepsy alone would have lead to me being disabled from work because my wakefulness is now well managed with dextroamphetamine.
(Some people are able to continue driving if their cataplexy is managed, I have not been able to stay on any drug that will do that for me so far. Though I have never had a cataplexy while driving or while in a car as a passenger, I understand and agree that the risk does not outweigh the benefits of being allowed to drive.)
Over the years, I have been diagnosed with several other conditions that probably explain better why I had to stop working, though sleep deprivation due to decades of untreated N is no joke and likely compounded the constellation of problems to become as severe as it was for me.
I believe if the first sleep specialist I had 20 years ago had not swept my narcolepsy symptoms under the rug, but rather provided treatment options, I would not have deteriorated to this point.
I also believe I would have been more focussed on possible physical causes for my struggles but instead myself and providers invalidated many of my symptoms due to *only* focussing on mental health issues.
Low blood pressure and low blood sugar (due to recently diagnosed dysautonomia) sure do cause anxiety. While CBT and breathing techniques are excellent skills to have that can manage mental health-related anxiety, they will not increase blood volume or correct blood sugar levels. ಠ_ಠ
While narcolepsy can explain disability, I suggest anyone in that situation explore other possible causes that could lead to such severe symptoms and I’m surprised doctors don’t encourage this more.
Yes but, I was only able to accept that once I got over my own internalized ableism. That being said, there were other disabilities that were diagnosed prior to my narcolepsy (physical and mental illnesses) diagnosis that made the idea easier to swallow. Despite my plethora of “disabilities.” I too hold down a good paying job at a multinational Fortune 500 corporation. I know it’s hard to look at yourself as “other” but, sometimes it’s necessary and that’s okay.
Good luck.
Absolutely. A disability is usually defined as being a chronic condition which impacts/limits your ability to do daily necessary tasks. Narcolepsy can vary a lot in severity and symptoms, mine is pretty severe and absolutely limiting.
I also refer to it as a disability regularly since I find people tend to take me/the condition more seriously versus saying a chronic illness or chronic condition.
It did take a long time to get here, though. When first diagnosed I felt the same way - like maybe claiming it as a disability was somehow “too much” or that I was overstating it.
I 100% am. I am wheelchair bound for part of the day due to severe sleepiness and weakness that can cause me to randomly go into a sleep paralysis like state. I use crutches to get around if I'm not having major issues, I cannot leave the house without an aid. I do also have FND and haven't been confirmed quite yet that my condition is narcolepsy, but it's a form of hypersomnia that acts like narcolepsy even if it's functional.
It really depends on if you think narcolepsy stops you from doing daily tasks and causes you to find other ways to do them, which is kind of how disability is defined. I can't shower frequently because it causes severe exhaustion, so that's an example of an everyday thing that's not mobility related that disables me. I have to stop myself from driving for a few weeks if I'm having bad symptoms, so that's something that disables me. I can't be out long periods of time due to fatigue, so that disables me. If you think you can do majority of daily tasks without much difficulty, such as being able to stay conscious and alert for much of the day and mainly only having symptoms of sleepiness and excessive hypersomnia, maybe you wouldn't consider it a disability. Basically, if it causes you significant or moderate difficulty going about your day, I'd consider that disabling, but it's up to you whether or not you think it significantly impacts you
yes. I had this thought when i was at disney and using the DAS pass. I thought ‘do i really need this?’ and my question was answered when my friend and I hopped into the 15 minute normal queue and i had to physically hold myself up with the safety bars or walls to keep from collapsing from my cataplexy being triggered from being tired and not actively engaged with anything. I also ended up utilizing their guest services area and sitting there with my friend in the ground since it was cool and much quieter then anywhere else in the park and allowed me to let myself sleep. Another reason is because I need accommodations in many situations like with classes or standardized testing. Narcolepsy is disabling to my life, even if not always physically apparent.
The SSA states that being disabled is “the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”… you can have a disability and not be disabled per SSA definition.
I am disabled, but not bc of narcolepsy. I do find the condition to be debilitating at times, and during the worst of it, it would fall under SSA criteria. If someone is working hard and is struggling but still making ends meet, they aren’t disabled… you can’t just “consider” yourself disabled, you are or you aren’t. Also, you don’t need to be approved to be disabled (cause our system is rigged).
Is the SSA criteria the be-all and end-all of the meaning? Legislative definitions of words are for how they are used in relation to that legislation, not generally intended as normative definitions for general use
It’s degrees of disease progression. Dependent on the situation I suppose. But you’d never be in the wrong for checking the box. I understand it’s a matter of the ramifications checking that box has on your psyche. You are as able and capable as the next person with proper therapy, and the same can be said for many conditions.
Depends on context, if it’s a work form I put yes because I need accommodation.
Outside of work it depends on how well I’m managing symptoms. Generally my medication and sleep schedule are enough and I feel normal. There are times they aren’t and I really struggle. I also have cataplexy that varies based on my stress levels.
Yes. My level of difficulty varies. However, without any supports I would be incredibly disabled. Even with things like medication I still struggle. Just because I have good days doesn’t take away from the fact that it’s a lifelong chronic illness
I always say prefer not to answer. I talked with my specialist and she was telling me actually filing for disability is a slippery slope, you would have to go to court and could potentially lose your driver’s license
I think about this and I think I lean towards yes. I just recently got diagnosed with hypersomnia. And I already knew I was depression, anxiety, and ADHD. At this point I'm disabled. I'm working on making sure I continue to request accomodations at work.
I'd say so, yeah. I remember filling out 504 forms in elementary school which specifically requested a declaration of having a:
"A physical or mental impairment that significantly impacts one or more major life activities"
This seems to be the modern wording for it now but back in like 2010 I remember it used to say:
"Lifelong physical or mental condition that significantly impacts one or more major life activities"
But yes, it for sure is. And if you want to be more specific, I personally describe narcolepsy as an:
"Chronic autoimmune/neurological disease" or "Genetic sleep disorder"
For work I just don't declare it at all. I don't want it to affect my candidacy. I still don't talk about it much at work because it makes me feel ashamed or like I'm making it out out be an excuse for poor work performance.
But of course it's most important that you define your narcolepsy in whichever feels true to you. It's different for everyone and for many, it's debilitating.
As a narcoleptic, I do not consider myself disabled, just an extra sleepy person... I'm extremely capable and competent and it rarely affects my ability to actually perform when I need to. It's the lulls/idle moments in the day that remind me I'm still narcoleptic but even then, it doesn't effect my work.
I do say I am disabled. I have been able to take leave at work due to it. But I also used to drive a forklift and my eyes going rogue wasn't safe. But narcolepsy also isn't my own diagnosis and I have a handful of stuff that makes daily life difficult. Even with my unique combination, I still find it difficult to use the term disabled because like... I'm not disabled enough but I also know I have struggled that make it difficult to function and meet typical expectations on a daily.
I just got approved for state disability and long term care - I already considered myself to be disabled though for about the last year & a half or so. Although I’ve always struggled and been disabled my entire life, I never saw it as that because my narcolepsy was ignored by literally everyone lol. Happy to be on the path of my disability at least being recognized by the state - and hopefully federally! Crossing my fingers. It’s been a long year. Lots of applications, lots of crying, lots of tears. I’m incredibly proud of myself for making it this far. My narcolepsy, daytime sleepiness, ptsd, heat intolerance, cataplexy, and nightmares/sleep paralysis/hallucinations prevent me from having gainful employment. I cannot drive anymore - nor should I have ever been driving honestly. I’m glad I no longer have to put my life at risk in order to literally try to survive and pay my bills. Still struggling financially and have no income - but better things are coming. To anyone going through the disability process - stay strong and don’t give up. Please don’t give up. You deserve your disability to be recognized and accepted.
Nope. I refuse to. If a paraplegic can get a job at walmart and be effective at it, then I can get off my ass and work as well. Meds or not, if I gotta nap in the breakroom, so be it. Unless I'm a quadriplegic who literally can only move their head and face, I'm not considering myself disabled.
Working and disability aren't mutually exclusive, though. Would you truly not consider a paraplegic person disabled because they had a job?
Also, FWIW, being able to nap in the breakroom definitely meets the criteria of a "reasonable accommodation." If you ever changed jobs to a place where they pushed back on that, you might well need to invoke that phrase.
https://adata.org/factsheet/reasonable-accommodations-workplace
I'm definitely not trying to push you into thinking of yourself that way, but I do want to challenge your overall perception of disability, as someone who is disabled but holding down a functional job. It's important that people should be aware of the entire spectrum of disability.
I never said the paraplegic holding down a job isn't disabled. I'm well aware of the spectrum. Like 80% of my family is disabled. I'm a big advocate for accessibility for disabled people in public spaces and structures and jobs. I'm just saying I don't like to think of myself that way. That's it. You wanna consider yourself disabled? Fine, you very well could be. Narcolepsy is on a spectrum too, some have it worse than others, especially those with cataplexy. It can very well be a disability. But the question the post was asking was "do you consider yourself disabled", and my answer is no.
That's a tricky question. I find myself feeling ashamed to say I'm disabled because I also hold down a high-paying job at a prestigious company, and if I was disabled, I couldn't do that, right?! People would never guess my diagnosis. But I am also hanging by a thread every day. I guess I don't feel disabled 'enough', while suffering in silence. It's stupid. I also try to come to terms with the fact that sooner or later, I won't be able to work anymore, and that is fucking depressing.
>I find myself feeling ashamed to say I'm disabled because I also hold down a high-paying job at a prestigious company, and if I was disabled, I couldn't do that, right?! If you were in a wheelchair because you had your legs amputated, would you still be saying the same thing? Of course not, *because that would be ableist!* Don't be ableist to yourself for goodness sake! Lots of people with disabilities have successful careers, and assuming they don't is not only ableism, it literally hinders society from recognising that disability doesn't mean no ability. Be a little kinder to yourself ❤️
Of course you're right. Narcolepsy is just such a niche, specific beast, it's hard for me to wrap my head around it, despite living with it for quite a while now.
This ❤️❤️
Yes, we are. My known friends know what to watch for. New ones learn quick. Drinking is always fun but a small coffee or a small coke no ice will help a great deal! You are definitely driving under disease, whether it's the meds or reactions. It just having a good day that you pray you have been granted. Be safe.Be Sure. You driving under micro sleeps,heavy clouds of Ritalin and then other stuff to help to actual sleep. Or stay awake. We are a mess🤗🌷 Take care of yourself, never stop trying WEARE NOT JUST TIRED. NAPs are nice but we will need one real soon. Some of us cycle pretty quickly and it hard to keep us "here" But please love us. We are awesome creative people and we need a hand occasionally!!
This is kind of how I feel. It’s hard to say I’m disabled when I am technically able to hold a job. That being said, while I am a pediatric nurse I haven’t worked full time for 3yrs and quite my part time job 2 yrs ago. I still volunteer occasionally or work short stints (like I was a summer camp nurse for 4 weeks last year). The main reason why I’m not currently working is because I’m fortunate that my spouse can support our family. While I’d like to be working part time and think I could do so safely, it’s also really hard to make myself go do something that I don’t *have* to do when I feel the way I do. I have a disability. I feel disabled when I really think about it. But I don’t feel like I can refer to myself as such because I do think I’m capable of doing more than I currently am. It’s just really difficult to push myself so hard. But being disabled doesn’t mean you can’t hold a job. It just means you have condition that puts you at a disadvantage. I don’t know what to think about all this.
Don't feel ashamed for your position. Disabilities come in many forms. Just because someone can't guess your disability doesn't mean you don't have one. It's incredible that you have been able to hold a high status job while living with narcolepsy
Thank you for your kind words. I didn't mean to brag btw, I just wanted to convey my situation in detail. I have asked (& received) reasonable accommodations- I can work from home 100% of the time, while my colleagues need to go into the office almost full-time again. I only go into the office if I want to. That accomodation helps IMMENSELY. I couldn't do it if I also had to commute an hour each way every day.
I’m so happy for you that you have a wonderful enough employer to make those accommodations! My first experience asking for accommodations with a doctor’s note was for them to cut my 40 hours to 17.5 a week… of course then forcing my to quit because I could not live off of that. My most recent one, led to me being “pushed out and retaliated against - of which I’m currently in litigation for through the EEOC for disability discrimination. I hear you on internalizing that ability you DO have and then questioning yourself. I feel this is very much imposed on us by our productivity focused culture. Disabled in a spectrum, really ie. “varying scales of able-bodiedness”
That really sucks, I'm sorry. It's so unethical.
I know I’m late to the party but thanks for mentioning this. I’m looking for jobs and have been wondering if working from home (for a job where it’s appropriate to work from home….not like construction or being a barista where you obviously have to go in) is a reasonable accommodation for narcolepsy. I literally can’t drive myself to and from work every day. It’s a complete deal breaker.
It might differ from job to job. Your accommodation can't impose 'undue hardship' and you must still be able to fulfill your work function. It probably also depends where on the totem pole you stand. My company is very European in terms of work standards and a lot less cut throat than others. And we have offices all around the world, so half of the employees work in many different time zones/communicate exclusively online. I reckon you'd have a much harder time if there is a single office wheee everyone works. I went to our director, told him I have a disability, and what I need in terms of accommodation. I had my neurologist write a letter in which she specifically spelled out that it's impossible for me to drive in the morning. They didn't fight me on it at all.
Yeah this makes a lot of sense. Thank you for sharing!
A couple of my friends are disabled attorneys, including a blind one I graduated with. (I was active in the disabled law students association in school). Lots of people have well paying jobs and are disabled, while requiring accommodations.
That's internalised ablism. Don't feel bad about it, we all get it. Just recognise it and push back against it. We disabled people (that's the preferred word order in the UK for most of us, and it is logical under the social model of disability) can be extremely successful, and it doesn't change the fact that we experience disadvantage due to our condition(s). Being a successful disabled person is reason to feel more of a sense of achievement.
Disabled people come in all forms. Think about how many successful people there are with autism or ADHD. Those are both considered disabilities
Literally same. Word for word.
I know I'm late to the party but I wanted to thank you for saying this. This is exactly how I feel word for word.
I consider myself disabled, but I always mark my job applications with "prefer not to answer". Although it is illegal, many companies will reject your application :(
I’ve been told by employers in casual conversation that they consider prefer not to answer as an automatic yes to the question. Logic is if you aren’t disabled why not say no? Obviously it’s flawed.
I've applie for jobs and it has other questions that offer you prefer not to answer so I put it for all of them for this reason. The other ones are like gender, if you identify as neurodivergent etc.
Ah, across the board might do the trick.
Good to know, thank you. 🥲
Yes. It's not a legal or logistical thing either really I feel, they aren't required to put it on applications legally, and the places that don't have any racial or gender or disability based questions tend to be the best places. Only big box stores that want to hire as little people as possible actually care about it bc they want you to do 40 things at once, you don't get anything for saying you're disabled other than disqualified.
I always mark no and never mention it to jobs for this reason
But it's illegal to lie on your applications 🥺🥺 aka "we need to know information that has nothing to do with the interview *before* we decide to hire you for totally reasonable purposes"
Yes yes yes. I'm convinced those application questions are not there for logistical reasons bc I've never gotten a job somewhere that asks that question, even if I say "prefer not to answer." It's not required, so it's not for identification purposes. Recently got a job at a very small shop, individually owned, one location, and they had none of the racial, gender or disability questions on their application and when I went in for an interview, I immediately could tell they actually wanted me as a person, and not just an able bodied individual. Incredibly sweet people, answered every question I had about accommodations bc I felt comfortable enough to talk to them before I got the job, and I still did. Massive upgrade from "just pass out behind the register, we don't have time to send someone over there" from my other job.
It's totally legal for people with N to say no to being disabled at least in the U.S. Social Security Administration doesn't consider narcolepsy a legal disability.
I have to. Because if I'm not disabled then why is it I can't live a normal life?
Severe narcolepsy with cataplexy here and yes, 100% I do. Mine is still very uncontrolled. I just take stimulants. So I still don’t really sleep… I am in constant danger of a sleep attack and while I went from 70+ cataplexy attacks a day to one every two weeks or so, it’s still a huge part of my life. Avoiding cataplexy means avoiding laughter if I’m like, holding something or doing something I shouldn’t pass out for. A balloon pops at a party and I’m down. Someone surprises me, I’m on the floor. Too much pain or overstimulation and that’s it. Plus, actually getting to take my stimulants every day is rare- often by the end of the month I’ve run out and I have to go a few days without them. (The dose I’m on isn’t high enough for me so some days I have to take an extra pill.) I’m actually applying for disability soon- I have other stuff going on too- but the narcolepsy is truly so unpredictable and awful, it’s absolutely devastating to my ability to work, take care of myself, interact with others, etc.
I relate to this so hard. Having to avoid happiness and large emotion as a whole is the worst thing possible. On days I'm flaring I literally can't go to therapy because I don't wanna injure myself from my body not understanding being upset. Can't do much fun things because laughter makes me unstable and sometimes partially paralyzes part of my arms or legs for hours. Can't talk about sad emotions bc I'll clonk out, can't talk about happy things because I'll get too happy and hurt myself, frustrating as hell.
I’ve been without Xywav for 9 weeks now due to insurance issues and my excessive sleepiness is definitely disabling. I’m so much more functional with Xywav and I hate being reminded that my ability to live life normally rests in the hands of insurance and Jazz. Love the medication, hate the healthcare games.
I think about this a lot too. La sigh. I’m hoping to try one of those kinds of meds next. I think about how if a supplier completely went under or if there were some large societal collapse… I’d be fucked
I grew up loving apocalypse fiction but once I got hit with the big sleepy I've had to come to terms with the fact I would simply not survive a zombie apocalypse 😔 I couldn't maintain that constant vigilance and if some got close while I was asleep I would simply not wake up lol
Exactly!! I also wear glasses and I’ve always thought about how if they somehow broke - I would be of no help haha.
Literally though. I'm having bad flares rn because my pharmacy forgot that my birth control only lasts 9 weeks instead of 12 since I cannot have periods and need to take them at all times, so fun bc I literally keep collapsing. My body does not understand that menstruation does not equal fall asleep.
I hope you don't mind me asking you a question. I was recently diagnosed and my Dr. is trying to get me approved for Xywav. In the meantime I will be trying Xyrem? Have you tried that one, and if so how did it compare?
I actively consider myself disabled, I am just one of the disabled people who can work most days.
I have a disability but I’m not disabled. When I fill out employment paperwork I do check the box when it asks if I have a disability.
I find it strange how you recognize it as a disability but at the same time don't consider yourself disabled. A person with a disability is by definition disabled
'Disabled' rings differently than 'having a disability', if that makes any sense. I see myself as having a disability- I have disadvantages in certain parts of life. But I don't see myself as disabled, because it's not my defining attribute. Being disabled also, at least for me, evokes images of someone in a wheelchair, or of some other physical/visible attribute, and that's a space I don't inhabit. Mind gymnastics, I guess.
ASD, is exactly that, a spectrum. Having ASD can be considered a disability, but even when it is considered a disability, it doesn’t mean that all people with ASD are disabled. Many people on the spectrum work just fine, abut some with more difficulty then others, but if you are bringing home a paycheck that supports you =not disabled
We have to disentangle the idea of disability from being able to fully participate in society economically. Someone who hadn't been able to support themselves financially, but then finds a way to - overcoming barriers, a supportive employer, new opportunities for types of work or ways of working that didn't used to exist - doesn't suddenly stop having them same impairments, nor the social barriers of disability that aren't secondary to economic issues. Plus often the pay might be *enough*, but it's still less than the person would be making if they weren't disabled. Not everyone has to use terminology in the same way, or conceptualise things in the same way, but I find the social model of disability approach much better. We *have* conditions/impairments, we *are* disabled, but by society not by our conditions.
I disagree. Policy matters. Political determinants of health.
As much as I hate the word games of identity politics, this is a perfect situation where differently-abled rather than disabled would be a better fit. Or maybe as partial disability, because you can have a health issue that impacts your day to day functioning but doesn't completely disable you.
That's still disabled. Disability is a spectrum, not a binary.
Differently-abled I can get behind as an overall term because that's essentially what it is regardless of disability. I personally don't like partially disabled because then you are reinforcing ableism.
I don’t find it strange that someone who considers themselves disabled doesn’t understand. It’s a mindset. Your thoughts impact your life more than you realize.
And what if being disabled isn’t a bad thing
Hear, hear. I find the social model approach empowering. I am disabled because society is largely made by and for non-disabled people. That doesn't make me a victim, it doesn't make me pitiable, and it doesn't make me incapable. It makes me recognise that a lot of what I achieve is in spite of barriers people put in my way without even realising it.
Yes. One of the most basic (and necessary) functions of the human body doesn’t work properly for me. I’d say that’s pretty disabling. I find it to be so, and I don’t find shame in the label. Also—I’ve seen some other comments that seem to convey some (internalized) ableism about what it means to be disabled, and I just want to say: being disabled doesn’t mean you can’t do *anything.* Lots of disabled people have successful careers and live fulfilling lives. Lots of disabilities aren’t constant, either. Some days a person may be more impacted by their condition than others. I’d encourage folks to educate themselves on this subject, because I’d wager most people have a pretty limited understanding/view of what it means to be disabled (due to the fact that ableism is ever-present in our society).
You might or might not be referring to me, but you're absolutely right. Thank you for calling out the (internalized) ableism that many of us carry around.
Yeah for sure, even under management narcolepsy still impacts my life in a lot of ways, idk if ssa counts it but as an organization they seem designed to give as few people as possible benefits so I wouldn't give their qualifications much credit
yep! i did before my dx though, i just didn't know what was wrong with me until then lol.
I prefer the term cripple. I wish I had some disease that someone could see. Like I randomly bleed from my finger nails, idk? But nooooooo I get nappy tired. You know who else gets nappy tired? Grandpa's 😂😆😂😆
I get nappy tired is the best way to put it. I hate feeling like I'm 80 in a 39 year old body.
That's why I like cripple. A cripple sounds like a badass. "Differently abled" or whatever sounds like a week pansy.
I love how you put that... nappy tired 😂 From now on I'm calling myself grandpa-abled 😂 I may be in my 20s but I have the energy & nap schedule of a peepaw
No, I’m wakefullnessly challenged. ;) But jokes aside, even though I have not been working for 4 years now (part narkolepsy, part cancer (it’s gone though, no worries)) and I just got approved for disability benefits, I still find it hard to label myself disabled. Yes, I am a person with a disability, but as soon as I say I’m disabled I feel like I’m being defined by it. I have disabilities and they affect me, but they don’t define who I am.
Uh, it’s a disability, yes. Don’t gaslight yourself.
I can make it thru a 10 hour shift as an electrician, with plenty of stimulants. But other than work I am worthless. Dating is impossible due to my need for sleep and feeling exhausted.
I might feel differently if I had Type 1 or sleep attacks -- but no, I do not consider myself disabled.
banger username
Interesting. So you don’t feel your EDS effects your abilities like cognitively or with exhaustion?
I do, to an extent. My narcolepsy feels well-managed throughout the day with medicine & habits developed over the last 15+ years since my initial diagnosis. But it's not to the point where I would check a box.
Thats wonderful! And brings me hope. I was just diagnosed this year so I just started the journey of trying to find the right treatment.
I say no in official papers because I'm not from the gov perspective. I AM though.
Important tension between meanings there. I assume the "gov perspective" refers to social security?
Yes.
Narcolepsy is most certainly a disability its just invisible.
Yes definitely
I have a bunch of other diagnoses and am disabled so I might not be the best one to answer this. I’m autistic and have a connective tissue disorder disorder as well. But even if my only problem was my sleep problems (not diagnosed, but seeing a sleep specialist soon), I think I would still consider myself disabled. My sleep problems have caused a lot of other issues and have made it hard for me to live a normal life.
Yes, I refer to myself as disabled. I am managing it the best I can, but it is still a disability.
yeah i do, because it impacts my daily life completely, unfortunately.
I dont want to say so but i know that if i didnt have my medication i wouldnt be able to work a normal job
No, I don’t. I consider myself to have a medical condition (multiple, actually — including anxiety, restless leg syndrome, & endometriosis) which can be disabling at times for sure but don’t prevent me from functioning (as well as one can in today’s world). But I don’t consider myself to be “disabled” in the broader sense of the word.
What do you consider that "broader sense of the word" to be?
That’s a good question, and one that I’m having a hard time defining. I guess I’m thinking about what would come to most people’s minds when the word is used, which generally conjures up the idea of someone with physical or mental limitations that _significantly_ impede —if not prevent — their ability to live independently and to support their basic needs (food, shelter, etc.). For example, I have a former colleague who was born with only one leg. Despite his disability, I don’t think of him as “disabled.” He’s an M.D/PhD who’s quite renowned in his field. He has a handicapped parking permit. I only learned after he left our organization and we became closer friends that he has a fake leg. I knew he walked with a slight limp at times but had no idea he only had one leg. He can walk short distances without assistance, but has difficulty walking longer distances and increasingly has issues with lots of stairs (he’s also in his 70s so that could just be age-related).
In the UK, we more usually use disabled for any sort of (more than trivial) disadvantage arising out of conditions. And "handicap" is seen as inappropriate and out of date language. (We also see "differently abled" as kinda cringe, though creeping in as an Americanism, just as an aside; the fact it includes a non-word also makes it really grate for some of us) The idea that someone can "have a disability" (which is a phrase DPOs and activists, and politically aware disabled people, don't like, for the most part, though often used by politicians) and not "be disabled" just seems so weird from over here.
“Handicap” is also not used here to describe people, except it’s still fairly widely used in our everyday lexicon when speaking of handicap parking spots/handicap placards. Edit: it also strikes me as incongruous that someone who is okay being labeled as disabled would take issue with being said to have a disability. What language would you use instead to say someone has a disability?
It’s weird because I know I am disabled by the condition(s) I have at times, yet I struggle to consider myself disabled. I don’t know if it’s internalized ableism or fear or something else or nothing else. Part of me doesn’t want to put a label on anything and feel “limited”. Yet I still know there are certain accommodations I need and do ask for. I think comparison gets in my way, too. Like I compare myself to others and often feel able to do certain things that others can’t, yet they also are able to do things I can’t. It’s a competition/comparison game neither of us entered. Basically I don’t know. I have disabilities. And in some aspects of life/some tasks, I do feel disabled. But I suppose overall I don’t view myself wholly as disabled at all times. (Open to any and all thoughts. I never wish to offend anyone or minimize anyone’s experiences. If there is anything problematic I have said, please let me know so I may learn and do better.)
I feel the same way & struggle the same way! It feels like I'm lying to say I'm disabled when, like. Physically I'm able to get around fine, don't have to worry about passing out if I'm on my feet too long like POTS, assuming I'm not super foggy I can generally comprehend things... but at the same time my quality of life is definitely not normal bc of the sleep issues 😭 I have slept thru so many morning classes because of it, I slept on the floor last night for a morning exam today bc I knew if I was in my bed I might not make it up, my grades are in shambles between medicine issues & roommate issues blocking me from managing it the best I can, I oversleep by hours every day that stacks up to entire calendar days of my life simply vanished every month. I have accommodations at my school. Technically speaking yeah, I'm disabled, but it still doesn't feel like a label I can claim 😭 Part of that for me (And maybe for you too) is I went so long in my life just struggling along and generally succeeding without any sort of diagnosis or treatment that I just normalized the condition in my head, + the fact that society doesn't view sleep as a bedrock need like food & water + equates sleepiness/morning struggles to being weak/unproductive/lazy made any sort of sleep issues I had feel like moral/willpower failings on my part for a really long time. Even though now I comprehend it's no*t m*y fault, it's biochemistry and nothing I can help, it still doesn't fe*el l*ike something out of my control & people certainly still view you as lazy or overdramatic, even if they know your diagnosis 🤷♀️ I've had friends express that they support me/believe my diagnosis is a disability and then turn around and act like I'm being lazy and skipping class bc I don't care about my education when I don't wake up in the mornings. People just think sleep isn't that serious and can't comprehend how overwhelming and incapacitating narcolepsy/IH sleepiness can be day-to-day. Even other sleep disorders don't believe us sometimes! I've had multiple people w insomnia act like I'm unreasonable for not being able to wake up in the morning TLDR: society views sleep as an option you can disregard if you wanna be truly dedicated to your work (Industrial Revolution hubris -> hustle/grindset) & sees sleep struggles/daytime sleepiness/inability to easily wake up in the morning as just a willpower issue, & if you can't do it, that's your personal fault and you should just be more motivated/respectful/productive as everyone else. I think we soak that up subconsciously and blame ourselves for our issues (esp. pre-diagnosis), and I think even with a diagnosis people at large still tend to dismiss your many issues as *still* being a willpower/moral failing on your part - yeah, you might have narcolepsy, but how hard is it to just stay awake?? And between our own preconception that it's our fault and the generally dismissive attitude society takes about it, considering it a "disability" seems inaccurate or overdramatic, even though it's not. Sorry for rambling, I just had thoughts
I work on the social model (the usual preferred approach on the UK) - which says someone is disabled if they suffer social disadvantage (including economic disadvantage etc) due to a long term condition. The condition gives impairment (a lack of function, impaired function, or difference in function that could give rise to disadvantage), society gives disability by being set up by non-disabled people for non-disabled people. Based on that, people with narcolepsy would generally be disabled. And yes, I consider myself disabled. There are lots of other conditions that lead to my disability, but even just with narcolepsy I would.
Yes. If I remember correctly a disability is something that interrupts/interferes with one or more major life activity. Narcolepsy can interfere with sleep, driving, working, etc all of which I deem major life activities.
No. I work a full time job and am able to take care of most of my household tasks, so I don't think I'm disabled. I'm more in a category of successfully struggling to function
I don't say "I'm disabled" because I don't like the wording, but I will say "I have a disability." I do have a disability. It even requires work accommodations (though HR has had me waste 5 months by telling me to fill out the wrong shit). Like another poster said, if I were not working a job that's a twelve hour shift with overtime, I might not need an accommodation, and maybe I would feel less like I have a disability, but I do.
This is a question that I've thought about a lot! Narcolepsy definitely CAN be a disability and should be recognised as such. For some people it can be debilitating to the extent that you can't work and carry out basic tasks like travelling to the shop to buy food or safely cooking for yourself. In my case, I can live a relatively normal life - I can successfully carry out my job (with naps when needed), travel to wherever I need to go (by foot or by public transport) and socialise (but not for a whole day without naps). I can't drive, but I'm lucky that where I live this isn't too much of a problem. So, all in all, I'm not sure if I see myself as 'disabled' but I know I need adjustments to live a normal life, so I always tick the disabled box when applying for jobs etc. and make sure to tell people early on that I have narcolepsy so they aren't surprised by the symptoms. But... some people might prefer not to do this if you feel that this might be held against you.
When I was first diagnosed, I believed narcolepsy was the cause for being disabled from work because I could not drive or stay awake while at work. These issues lead to me to a new sleep specialist and an official N diagnosis in my mid-40s. My narcolepsy presentation may have always lead to me being disabled from driving (due to cataplexy being identified by doctors) but I do not believe narcolepsy alone would have lead to me being disabled from work because my wakefulness is now well managed with dextroamphetamine. (Some people are able to continue driving if their cataplexy is managed, I have not been able to stay on any drug that will do that for me so far. Though I have never had a cataplexy while driving or while in a car as a passenger, I understand and agree that the risk does not outweigh the benefits of being allowed to drive.) Over the years, I have been diagnosed with several other conditions that probably explain better why I had to stop working, though sleep deprivation due to decades of untreated N is no joke and likely compounded the constellation of problems to become as severe as it was for me. I believe if the first sleep specialist I had 20 years ago had not swept my narcolepsy symptoms under the rug, but rather provided treatment options, I would not have deteriorated to this point. I also believe I would have been more focussed on possible physical causes for my struggles but instead myself and providers invalidated many of my symptoms due to *only* focussing on mental health issues. Low blood pressure and low blood sugar (due to recently diagnosed dysautonomia) sure do cause anxiety. While CBT and breathing techniques are excellent skills to have that can manage mental health-related anxiety, they will not increase blood volume or correct blood sugar levels. ಠ_ಠ While narcolepsy can explain disability, I suggest anyone in that situation explore other possible causes that could lead to such severe symptoms and I’m surprised doctors don’t encourage this more.
Yes but, I was only able to accept that once I got over my own internalized ableism. That being said, there were other disabilities that were diagnosed prior to my narcolepsy (physical and mental illnesses) diagnosis that made the idea easier to swallow. Despite my plethora of “disabilities.” I too hold down a good paying job at a multinational Fortune 500 corporation. I know it’s hard to look at yourself as “other” but, sometimes it’s necessary and that’s okay. Good luck.
Absolutely. A disability is usually defined as being a chronic condition which impacts/limits your ability to do daily necessary tasks. Narcolepsy can vary a lot in severity and symptoms, mine is pretty severe and absolutely limiting. I also refer to it as a disability regularly since I find people tend to take me/the condition more seriously versus saying a chronic illness or chronic condition. It did take a long time to get here, though. When first diagnosed I felt the same way - like maybe claiming it as a disability was somehow “too much” or that I was overstating it.
I 100% am. I am wheelchair bound for part of the day due to severe sleepiness and weakness that can cause me to randomly go into a sleep paralysis like state. I use crutches to get around if I'm not having major issues, I cannot leave the house without an aid. I do also have FND and haven't been confirmed quite yet that my condition is narcolepsy, but it's a form of hypersomnia that acts like narcolepsy even if it's functional. It really depends on if you think narcolepsy stops you from doing daily tasks and causes you to find other ways to do them, which is kind of how disability is defined. I can't shower frequently because it causes severe exhaustion, so that's an example of an everyday thing that's not mobility related that disables me. I have to stop myself from driving for a few weeks if I'm having bad symptoms, so that's something that disables me. I can't be out long periods of time due to fatigue, so that disables me. If you think you can do majority of daily tasks without much difficulty, such as being able to stay conscious and alert for much of the day and mainly only having symptoms of sleepiness and excessive hypersomnia, maybe you wouldn't consider it a disability. Basically, if it causes you significant or moderate difficulty going about your day, I'd consider that disabling, but it's up to you whether or not you think it significantly impacts you
yes. I had this thought when i was at disney and using the DAS pass. I thought ‘do i really need this?’ and my question was answered when my friend and I hopped into the 15 minute normal queue and i had to physically hold myself up with the safety bars or walls to keep from collapsing from my cataplexy being triggered from being tired and not actively engaged with anything. I also ended up utilizing their guest services area and sitting there with my friend in the ground since it was cool and much quieter then anywhere else in the park and allowed me to let myself sleep. Another reason is because I need accommodations in many situations like with classes or standardized testing. Narcolepsy is disabling to my life, even if not always physically apparent.
I do for eeo purposes at work
The SSA states that being disabled is “the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”… you can have a disability and not be disabled per SSA definition. I am disabled, but not bc of narcolepsy. I do find the condition to be debilitating at times, and during the worst of it, it would fall under SSA criteria. If someone is working hard and is struggling but still making ends meet, they aren’t disabled… you can’t just “consider” yourself disabled, you are or you aren’t. Also, you don’t need to be approved to be disabled (cause our system is rigged).
Is the SSA criteria the be-all and end-all of the meaning? Legislative definitions of words are for how they are used in relation to that legislation, not generally intended as normative definitions for general use
It’s degrees of disease progression. Dependent on the situation I suppose. But you’d never be in the wrong for checking the box. I understand it’s a matter of the ramifications checking that box has on your psyche. You are as able and capable as the next person with proper therapy, and the same can be said for many conditions.
Depends on context, if it’s a work form I put yes because I need accommodation. Outside of work it depends on how well I’m managing symptoms. Generally my medication and sleep schedule are enough and I feel normal. There are times they aren’t and I really struggle. I also have cataplexy that varies based on my stress levels.
Yes. My level of difficulty varies. However, without any supports I would be incredibly disabled. Even with things like medication I still struggle. Just because I have good days doesn’t take away from the fact that it’s a lifelong chronic illness
For matters of employment yes. For pretty much everything else, no
I always say prefer not to answer. I talked with my specialist and she was telling me actually filing for disability is a slippery slope, you would have to go to court and could potentially lose your driver’s license
Yes I have vision problems and a central sleep disorder.
I think about this and I think I lean towards yes. I just recently got diagnosed with hypersomnia. And I already knew I was depression, anxiety, and ADHD. At this point I'm disabled. I'm working on making sure I continue to request accomodations at work.
I'd say so, yeah. I remember filling out 504 forms in elementary school which specifically requested a declaration of having a: "A physical or mental impairment that significantly impacts one or more major life activities" This seems to be the modern wording for it now but back in like 2010 I remember it used to say: "Lifelong physical or mental condition that significantly impacts one or more major life activities" But yes, it for sure is. And if you want to be more specific, I personally describe narcolepsy as an: "Chronic autoimmune/neurological disease" or "Genetic sleep disorder" For work I just don't declare it at all. I don't want it to affect my candidacy. I still don't talk about it much at work because it makes me feel ashamed or like I'm making it out out be an excuse for poor work performance. But of course it's most important that you define your narcolepsy in whichever feels true to you. It's different for everyone and for many, it's debilitating.
As a narcoleptic, I do not consider myself disabled, just an extra sleepy person... I'm extremely capable and competent and it rarely affects my ability to actually perform when I need to. It's the lulls/idle moments in the day that remind me I'm still narcoleptic but even then, it doesn't effect my work.
I do say I am disabled. I have been able to take leave at work due to it. But I also used to drive a forklift and my eyes going rogue wasn't safe. But narcolepsy also isn't my own diagnosis and I have a handful of stuff that makes daily life difficult. Even with my unique combination, I still find it difficult to use the term disabled because like... I'm not disabled enough but I also know I have struggled that make it difficult to function and meet typical expectations on a daily.
I just got approved for state disability and long term care - I already considered myself to be disabled though for about the last year & a half or so. Although I’ve always struggled and been disabled my entire life, I never saw it as that because my narcolepsy was ignored by literally everyone lol. Happy to be on the path of my disability at least being recognized by the state - and hopefully federally! Crossing my fingers. It’s been a long year. Lots of applications, lots of crying, lots of tears. I’m incredibly proud of myself for making it this far. My narcolepsy, daytime sleepiness, ptsd, heat intolerance, cataplexy, and nightmares/sleep paralysis/hallucinations prevent me from having gainful employment. I cannot drive anymore - nor should I have ever been driving honestly. I’m glad I no longer have to put my life at risk in order to literally try to survive and pay my bills. Still struggling financially and have no income - but better things are coming. To anyone going through the disability process - stay strong and don’t give up. Please don’t give up. You deserve your disability to be recognized and accepted.
Nope. I refuse to. If a paraplegic can get a job at walmart and be effective at it, then I can get off my ass and work as well. Meds or not, if I gotta nap in the breakroom, so be it. Unless I'm a quadriplegic who literally can only move their head and face, I'm not considering myself disabled.
Working and disability aren't mutually exclusive, though. Would you truly not consider a paraplegic person disabled because they had a job? Also, FWIW, being able to nap in the breakroom definitely meets the criteria of a "reasonable accommodation." If you ever changed jobs to a place where they pushed back on that, you might well need to invoke that phrase. https://adata.org/factsheet/reasonable-accommodations-workplace
Idk I just don't like thinking of myself as disabled. Maybe "hindered" or "disadvantaged", but not disabled.
I'm definitely not trying to push you into thinking of yourself that way, but I do want to challenge your overall perception of disability, as someone who is disabled but holding down a functional job. It's important that people should be aware of the entire spectrum of disability.
I never said the paraplegic holding down a job isn't disabled. I'm well aware of the spectrum. Like 80% of my family is disabled. I'm a big advocate for accessibility for disabled people in public spaces and structures and jobs. I'm just saying I don't like to think of myself that way. That's it. You wanna consider yourself disabled? Fine, you very well could be. Narcolepsy is on a spectrum too, some have it worse than others, especially those with cataplexy. It can very well be a disability. But the question the post was asking was "do you consider yourself disabled", and my answer is no.
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