DeathRabbit

Annoying Reactions Of Friends/family/acquaintances To Narcolepsy

30 posts in this topic

I'm betting you guys have all been annoyed at one time or another by someone else's reaction to your condition. Nobody seems to understand the disease unless they have it and some are skeptical that it's even a real thing. Many, many times, when I try to start talking about N, people will try to identify with my symptoms. I'll be talking about the memory/concentration issues or the EDS and they will be like "I get that way too, sometimes!" While I realize they are probably just trying to be nice, it feels really insulting because it seems like they are saying that N is no big deal. Getting tired every once in a while because you don't keep good sleeping habits is a whole lot different than consistently getting 9 hrs of sleep and feeling like you haven't slept in days every time you wake up. And then I had one person tell me that it was just all in my head, and I just felt bad because I thought I was sick. I wanted to wring her neck! :angry: It also makes me wonder how many other people think I am just making *BEEP* up or being emo. I know my Dad has even suggested multiple times that this might all be a result of depression. And then when I get pissed off at that suggestion, he seems confused, as if he truly doesnt get how he just undermined my daily struggles. I think in general, these insulting positions people adopt are because noone is properly educated about the disorder. People look nonplussed when I tell them it's actually a result of localized brain damage. And most of them just think you fall asleep at random intervals and that's all that narcolepsy entails. They don't seem to get the worst effects of N happen to you when you are wide awake and trying to lead a normal, productive life. What are some of the reactions you guys have experienced that sort of pissed you off?

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I think we can all relate to you in this area, DeathRabbit. Sometimes it seems like family is the worst because they feel they can say what they want. Last Thanksgiving when I was visiting relatives and nodded off, my aunt later asked me what time I went to bed the night before and if I was out late. When family makes comments and I remind them of my N, I usually get a condescending, "Riiiiight." My professors, who know I have N, make comments like, "At least no one fell asleep during class." Friends who feel sleepy sometimes say they think they "caught" my N. My biggest problem is with the people who feel it is bad that I take Ritalin which they call legal meth. It bothered an ex boyfriend so much that he called me a drug addict.

My best advice is to try to stop caring what other people say or think and to stay positive.

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I think we can all relate to you in this area, DeathRabbit. Sometimes it seems like family is the worst because they feel they can say what they want. Last Thanksgiving when I was visiting relatives and nodded off, my aunt later asked me what time I went to bed the night before and if I was out late. When family makes comments and I remind them of my N, I usually get a condescending, "Riiiiight." My professors, who know I have N, make comments like, "At least no one fell asleep during class." Friends who feel sleepy sometimes say they think they "caught" my N. My biggest problem is with the people who feel it is bad that I take Ritalin which they call legal meth. It bothered an ex boyfriend so much that he called me a drug addict.

My best advice is to try to stop caring what other people say or think and to stay positive.

Yeah, the whole catching N thing; I deal with that daily. People are always making that comment and it is always irritating but I have kinda learned to tune it out. Often times, I thin kthey mean well, so I pick and choose my battles and will only address the grievance if I think they were being deliberately antagonistic.

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I do not expect anyone to fully understand all of this- I am still learning. I choose people to tell very carefully- and even then- keep it very simple.

Nobody knew I had this before diagnosis, so everyone certainly does not need to know now.

I have had the recent frustration of several family members giving me advice and telling me what was wrong. I told them firmly: I have lived with this undiagnosed from childhood until age 45- you had plenty of chances to make a diagnosis. Since nobody ever guessed Narcolepsy with Cataplexy, your time for pin-the-tail on the diagnosis is over. If you want to discuss my "rare disease", please go learn something about it so we can have an intelligent discussion. Until then, please keep your opinions to yourself- they are not helpful-just annoying. I would prefer a family who cares enough to learn, support and encourage- if that is more than you can give, I understand. I would settle for a family that is not annoying.

I have had no more comments since then. And a few have started learning. But they are not annoying and I can live with that.

My situation is further complicated by a rough withdrawal from a medication prescribed for a wrong diagnosis. Withdrawal made me very emotional- when I am generally level headed. I would need a powerpoint presentation to fully explain the details- so my expectations are set low for real understanding.

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I do not expect anyone to fully understand all of this- I am still learning. I choose people to tell very carefully- and even then- keep it very simple.

Nobody knew I had this before diagnosis, so everyone certainly does not need to know now.

I have had the recent frustration of several family members giving me advice and telling me what was wrong. I told them firmly: I have lived with this undiagnosed from childhood until age 45- you had plenty of chances to make a diagnosis. Since nobody ever guessed Narcolepsy with Cataplexy, your time for pin-the-tail on the diagnosis is over. If you want to discuss my "rare disease", please go learn something about it so we can have an intelligent discussion. Until then, please keep your opinions to yourself- they are not helpful-just annoying. I would prefer a family who cares enough to learn, support and encourage- if that is more than you can give, I understand. I would settle for a family that is not annoying.

I have had no more comments since then. And a few have started learning. But they are not annoying and I can live with that.

My situation is further complicated by a rough withdrawal from a medication prescribed for a wrong diagnosis. Withdrawal made me very emotional- when I am generally level headed. I would need a powerpoint presentation to fully explain the details- so my expectations are set low for real understanding.

Yeah, that's really all I ask. Even if my friends and family don't completely understand my condition, I would at least like them to give me the benefit of the doubt, instead of insisting that there's something I can do by changing my attitude or lifestyle that will fix everything.

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Yeah, that's really all I ask. Even if my friends and family don't completely understand my condition, I would at least like them to give me the benefit of the doubt, instead of insisting that there's something I can do by changing my attitude or lifestyle that will fix everything.

I feel this way all the time! I sort of fell down a couple of steps last night after my brother scared me... he laughs and then goes to my parents say "omg all I did was walk by and she fell what is wrong with her"? My family just ignores my illness and dismiss it if I say anything.

I now tell people I am missing the chemical that regulates wakefulness and doesn't allow me deep sleep... but I kindof like the "localized brain trauma".

Today was prolly the worst... having a psychiatrist give me the run around about "my sleep problems" I would think she would of had at least looked it up and pretended she knew what she was talking about! I wish there was something I could do to change, without needing these nutty drugs! If I could just eat better and go to the gym... but its just not like that!

I am learning to not care, at least I can come on here and have someone understand... Just when a Doctor looks at you like you are faking it? Yes I wanted to fall down the steps! it was so fun! yes I want to take these meds that make me feel like *BEEP* and not able to eat! yes I would rather go to bed then go out and party with my friends! yes I would rather fall asleep while studying and do bad on an exam! I have kept my mouth shut about the comment made on here about "faking it" that really got me... This is not something I can fake! Id rather fake cancer, then people would at least care! I get nothing out of taking adderall except being able to stay awake behind the wheel and at work, it doesn't help me concentrate it takes my concentration away!

Thank you for letting me vent! today has been a tough one, and I cant even *BEEP* and complain because no one would understand why I am so annoyed lol! Well you all do... So thanks again

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I feel this way all the time! I sort of fell down a couple of steps last night after my brother scared me... he laughs and then goes to my parents say "omg all I did was walk by and she fell what is wrong with her"? My family just ignores my illness and dismiss it if I say anything.

I now tell people I am missing the chemical that regulates wakefulness and doesn't allow me deep sleep... but I kindof like the "localized brain trauma".

Today was prolly the worst... having a psychiatrist give me the run around about "my sleep problems" I would think she would of had at least looked it up and pretended she knew what she was talking about! I wish there was something I could do to change, without needing these nutty drugs! If I could just eat better and go to the gym... but its just not like that!

I am learning to not care, at least I can come on here and have someone understand... Just when a Doctor looks at you like you are faking it? Yes I wanted to fall down the steps! it was so fun! yes I want to take these meds that make me feel like *BEEP* and not able to eat! yes I would rather go to bed then go out and party with my friends! yes I would rather fall asleep while studying and do bad on an exam! I have kept my mouth shut about the comment made on here about "faking it" that really got me... This is not something I can fake! Id rather fake cancer, then people would at least care! I get nothing out of taking adderall except being able to stay awake behind the wheel and at work, it doesn't help me concentrate it takes my concentration away!

Thank you for letting me vent! today has been a tough one, and I cant even *BEEP* and complain because no one would understand why I am so annoyed lol! Well you all do... So thanks again

Yeah that part about just being more healthy to cure Narcolepsy, that's bull*BEEP*. I workout in 4 to 5 one hour sessions each week, and I get 8+ hours of sleep every night, usually 9+. My sleep routine and exercise routine is better than 90% of Americans. But I still feel like I'm prolly in the bottom 10% for wellness. And yeah, that's not by choice. A positive attitude does help to an extent, but even if I have a day where I manage to be all sunshine and rainbows, it's not like I'm cured. I'm kinda with you. Having an orphan disease noone has ever heard of sucks donkey butt. I'm halfway hoping that the MRI shows I have MS. That way I can then blame my issues on something that petty people with small minds can still wrap their brains around.

This song is pretty much what it is like to have N (Blue Oyster Cover):

"You blame me for my silence, say it's time I changed and grew..."

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I get really annoyed with this too. I have decided to tell everyone who is close to me because it is hurting literally every aspect of my life. Home, work, and social. At home alot of times my husband is left to pick up the slack because I don't have enough energy (obviously he knows), at work my co-workers would just think I didn't want to do my job well- due to the fact that I don't always get as much done as I should- and that I get to nap and they don't, and my friends would think I was blowing them off if they didn't know that I had N and was sleeping through our plans.

So far most people have been receptive- others not so much. I know my dad has said the depression thing too- and I answer with the fact that I have medical proof from my MSLT that it is not depression. HOWEVER I do feel that anyone who is tired and physically and mentally exhausted all the time would be depressed- although now that I know what is going on and that I'm not just a crazy it definitely has helped with the depression.

I have missed school due to being to exhausted to drive to class (even if I had made it I would not have been worth a crap- math+foggy mind= no bueno.) So I emailed my professor and explained the reason for my absence. She was understanding and told me if I need extra help that she would be willing to sit down with me, and also that she would have a copy of her notes for me before the next class! That was pretty awesome.

I feel honesty is the best policy. I'm not going to hide this thing for the rest of my life because people choose to believe that it may be "depression" or "that I'm making it up." The fact is I'm not. This is a forever thing and I'm not going to be anything other than a gal with N who is trying her very best to be the best she can be. AND on my good days I am pretty darn great so they can kiss my butt tongue.gif

This is just my outlook on it, and I'm not asking for sympathy from anyone by telling them- I just want them to know how much I do care about relationships, work, school, ETC. I feel if they were unaware they would just think I was a terrible wife, co-worker, friend, and student on my bad days. It may come back to bite me in the ass further down the road, but for now I think it's going rather well.

I may have been a little repetative there- sorry about that. Good luck with everything everyone!

Kristen

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I get really annoyed with this too. I have decided to tell everyone who is close to me because it is hurting literally every aspect of my life. Home, work, and social. At home alot of times my husband is left to pick up the slack because I don't have enough energy (obviously he knows), at work my co-workers would just think I didn't want to do my job well- due to the fact that I don't always get as much done as I should- and that I get to nap and they don't, and my friends would think I was blowing them off if they didn't know that I had N and was sleeping through our plans.

So far most people have been receptive- others not so much. I know my dad has said the depression thing too- and I answer with the fact that I have medical proof from my MSLT that it is not depression. HOWEVER I do feel that anyone who is tired and physically and mentally exhausted all the time would be depressed- although now that I know what is going on and that I'm not just a crazy it definitely has helped with the depression.

I have missed school due to being to exhausted to drive to class (even if I had made it I would not have been worth a crap- math+foggy mind= no bueno.) So I emailed my professor and explained the reason for my absence. She was understanding and told me if I need extra help that she would be willing to sit down with me, and also that she would have a copy of her notes for me before the next class! That was pretty awesome.

I feel honesty is the best policy. I'm not going to hide this thing for the rest of my life because people choose to believe that it may be "depression" or "that I'm making it up." The fact is I'm not. This is a forever thing and I'm not going to be anything other than a gal with N who is trying her very best to be the best she can be. AND on my good days I am pretty darn great so they can kiss my butt tongue.gif

This is just my outlook on it, and I'm not asking for sympathy from anyone by telling them- I just want them to know how much I do care about relationships, work, school, ETC. I feel if they were unaware they would just think I was a terrible wife, co-worker, friend, and student on my bad days. It may come back to bite me in the ass further down the road, but for now I think it's going rather well.

I may have been a little repetative there- sorry about that. Good luck with everything everyone!

Kristen

Yeah, pretty much everyone who knows me well or deals with me on a day to day basis knows for the exact same reason. I don't want to seem like a flaky bum.

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I emailed a professor after having a terrible time with his last test, didnt say I had N but told him the basic idea of the disease. Anyhow he wrote me the sweetest nicest note in return I even cried a little it was so caring.

I am not used to that... I am used to people like my family who don't believe or care. So it is important to say something when something important is at stake, but for me its a need to know basis... most people at my job have no idea... and I kindof lost most of my fair weather friends so there is no reason to tell them either.

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I emailed a professor after having a terrible time with his last test, didnt say I had N but told him the basic idea of the disease. Anyhow he wrote me the sweetest nicest note in return I even cried a little it was so caring.

I am not used to that... I am used to people like my family who don't believe or care. So it is important to say something when something important is at stake, but for me its a need to know basis... most people at my job have no idea... and I kindof lost most of my fair weather friends so there is no reason to tell them either.

That's lame. I say *BEEP* em if they are gonna be like that. I mean what was their reasoning? Did they think it was contagious or something? I just really cant fathom being like "You have a disease, so were through"

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Thanks so much for bringing up this topic. I've been really struggling with this the last few weeks. I was diagnosed N w/Cataplexy after more than 20 years of not knowing I had it.

I've been trying to figure out my meds and sometimes I talk to friends and family about the negative aspects of the meds. A few times they've said: "Why don't you just quit taking the meds? You did fine without them for 20 years." How do you explain to someone that since starting on the drugs you've realized how VERY, VERY tired you were for years and years.....and that you can't go back to living that way. I also can't go back to having cataplexy falls where I could hurt myself. And I can't go back to having neck weakness and my head flopping sideways when I'm in a stressful meeting at work.

I confided in a close friend of mine that I'm worried that I'm losing so much weight on the drugs. I seem to be losing 1-2 lbs per week. She came back with a snippy remark: "If that's your biggest problem in life, you have it really tough!" And she said it in a very angry tone. A month later, we got together and she told me she had gone onto one of those weight loss vitamin injection programs where she will be losing 4-5 lbs per week. And she starts telling me how she'll be 60 lbs lighter by xmas. When she told me, I have to be honest, I was so angry. What is this? A losing weight competition? I was sharing my fears when I told her about the weight loss....not spurning on a challenge.

It's getting to the point where I'm afraid to talk to my close friends and family about how I'm doing. I want to talk to them for support....but when I do, I always end up feeling worse.

It gets so lonely sometimes..... It's such a struggle to put one foot in front of the other.

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Thanks so much for bringing up this topic. I've been really struggling with this the last few weeks. I was diagnosed N w/Cataplexy after more than 20 years of not knowing I had it.

I've been trying to figure out my meds and sometimes I talk to friends and family about the negative aspects of the meds. A few times they've said: "Why don't you just quit taking the meds? You did fine without them for 20 years." How do you explain to someone that since starting on the drugs you've realized how VERY, VERY tired you were for years and years.....and that you can't go back to living that way. I also can't go back to having cataplexy falls where I could hurt myself. And I can't go back to having neck weakness and my head flopping sideways when I'm in a stressful meeting at work.

I confided in a close friend of mine that I'm worried that I'm losing so much weight on the drugs. I seem to be losing 1-2 lbs per week. She came back with a snippy remark: "If that's your biggest problem in life, you have it really tough!" And she said it in a very angry tone. A month later, we got together and she told me she had gone onto one of those weight loss vitamin injection programs where she will be losing 4-5 lbs per week. And she starts telling me how she'll be 60 lbs lighter by xmas. When she told me, I have to be honest, I was so angry. What is this? A losing weight competition? I was sharing my fears when I told her about the weight loss....not spurning on a challenge.

It's getting to the point where I'm afraid to talk to my close friends and family about how I'm doing. I want to talk to them for support....but when I do, I always end up feeling worse.

It gets so lonely sometimes..... It's such a struggle to put one foot in front of the other.

"Hell is other people" -Sartre

That quote about sums up this thread hah. Sorry about that though.You would think that a good friend would try to be supportive, regardless of what they thought about N, but it's not always the case. I dunno, maybe the figure they owe you the truth in order to try to get you to snap out of what they think is just a pity party, and if it was a pity party, they'd be right. But you can't just will away N. You can't just will away brain damage. We aren't sleepy cuz our attitude sucks. I'm really hoping that the condition will get more legitimacy as scientists learn more about it.

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Thanks so much for bringing up this topic. I've been really struggling with this the last few weeks. I was diagnosed N w/Cataplexy after more than 20 years of not knowing I had it.

I've been trying to figure out my meds and sometimes I talk to friends and family about the negative aspects of the meds. A few times they've said: "Why don't you just quit taking the meds? You did fine without them for 20 years." How do you explain to someone that since starting on the drugs you've realized how VERY, VERY tired you were for years and years.....and that you can't go back to living that way. I also can't go back to having cataplexy falls where I could hurt myself. And I can't go back to having neck weakness and my head flopping sideways when I'm in a stressful meeting at work.

I confided in a close friend of mine that I'm worried that I'm losing so much weight on the drugs. I seem to be losing 1-2 lbs per week. She came back with a snippy remark: "If that's your biggest problem in life, you have it really tough!" And she said it in a very angry tone. A month later, we got together and she told me she had gone onto one of those weight loss vitamin injection programs where she will be losing 4-5 lbs per week. And she starts telling me how she'll be 60 lbs lighter by xmas. When she told me, I have to be honest, I was so angry. What is this? A losing weight competition? I was sharing my fears when I told her about the weight loss....not spurning on a challenge.

It's getting to the point where I'm afraid to talk to my close friends and family about how I'm doing. I want to talk to them for support....but when I do, I always end up feeling worse.

It gets so lonely sometimes..... It's such a struggle to put one foot in front of the other.

What a great friend! NOT, I am so tired of people telling me to eat a burger... I will be asking my doc for an appetite stimulant on Monday, and he will be giving me one! Not being able to eat has made my N 50% worse!!! and now have starting having bad C again... Havent had it like this since i was 17/18 with a terrible diet and not eating as much as I needed. I am a tiny person and canNOT loose another lbs but they just keep melting away... and with it I am now super weak along with the worst EDS that Ive ever had. And thats with being on all these drugs!

My suggestion is to drink a supplemental drink in the am! Target has one that is 6.99 for 6, make sure you get the "plus" one its loaded with fat and calories... It should help stabilize your weight.

Your friend really just pissed me off!! If I had the choice Id have a little extra meat on my bones, have a reason to go to the gym and eat healthy! But, Im stuck eating crap cuz its the only thing with calories and fat... well I eat a lot of Nuts too... but this cheese bagel covered in cream cheese (should taste good dosent) has taken me 4 hours to finish! Yay stimulants!

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What a great friend! NOT, I am so tired of people telling me to eat a burger... I will be asking my doc for an appetite stimulant on Monday, and he will be giving me one! Not being able to eat has made my N 50% worse!!! and now have starting having bad C again... Havent had it like this since i was 17/18 with a terrible diet and not eating as much as I needed. I am a tiny person and canNOT loose another lbs but they just keep melting away... and with it I am now super weak along with the worst EDS that Ive ever had. And thats with being on all these drugs!

My suggestion is to drink a supplemental drink in the am! Target has one that is 6.99 for 6, make sure you get the "plus" one its loaded with fat and calories... It should help stabilize your weight.

Your friend really just pissed me off!! If I had the choice Id have a little extra meat on my bones, have a reason to go to the gym and eat healthy! But, Im stuck eating crap cuz its the only thing with calories and fat... well I eat a lot of Nuts too... but this cheese bagel covered in cream cheese (should taste good dosent) has taken me 4 hours to finish! Yay stimulants!

That's a good idea, Meg. I was just about to suggest protein shakes. They've got some made by Muscle Milk that actually don't taste God awful, and it will give you vitamins and stave off burning muscle. I know some days the adderall makes me not want to eat too, but as nauseous as food makes me feel, once I take a bite or two, my appetite wakes up. That might, just be me, but you can try taking a bite when you get that food averse feeling and seeing if that helps any.

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I agree....once I start eating a few bites I find food "somewhat" desirable.

Throughout the day, I don't have a drive to eat at all.

Often, I'll feel my stomach growl and that's the sign I use to gauge that I need to eat.

I've noticed that food I used to love....doesn't taste good anymore. Coffee tastes terrible. Wine tastes terrible.

Sweet things seem to taste the same. (yay! chocolate and ice cream)

I've taken to eating in the evening when the drugs wear off. Food tastes a bit better at that time. But it certainly isn't healthy to be eating so late in the evening.

I've been looking at those protein drinks....but I figured they would taste awful. I'm on Concerta right now and that 6 hour mark....when the drug drops off....is such a terrible time for me. I can't focus and my brain goes to mush. I've noticed if I eat something at that time....it helps. Maybe i should try one of these protein drinks and see if that does the trick. Getting home on the subway has been terrible the last few weeks....feeling tired and my brain hurts. The other thing i've noticed is that the Concerta crash isn't as bad on the weekends....and i can't figure out why. Is it because I'm not focusing so much (i work on a computer all day during the week) or is it because during the weekend when i feel tired i sit down and relax a bit. ( I never take naps on the weekend.) I don't know what it is....

Thanks for listening Meg and DeathRabbit. It really helps.

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I agree....once I start eating a few bites I find food "somewhat" desirable.

Throughout the day, I don't have a drive to eat at all.

Often, I'll feel my stomach growl and that's the sign I use to gauge that I need to eat.

I've noticed that food I used to love....doesn't taste good anymore. Coffee tastes terrible. Wine tastes terrible.

Sweet things seem to taste the same. (yay! chocolate and ice cream)

I've taken to eating in the evening when the drugs wear off. Food tastes a bit better at that time. But it certainly isn't healthy to be eating so late in the evening.

I've been looking at those protein drinks....but I figured they would taste awful. I'm on Concerta right now and that 6 hour mark....when the drug drops off....is such a terrible time for me. I can't focus and my brain goes to mush. I've noticed if I eat something at that time....it helps. Maybe i should try one of these protein drinks and see if that does the trick. Getting home on the subway has been terrible the last few weeks....feeling tired and my brain hurts. The other thing i've noticed is that the Concerta crash isn't as bad on the weekends....and i can't figure out why. Is it because I'm not focusing so much (i work on a computer all day during the week) or is it because during the weekend when i feel tired i sit down and relax a bit. ( I never take naps on the weekend.) I don't know what it is....

Thanks for listening Meg and DeathRabbit. It really helps.

No prob. If you do get some shake mix, make sure it's got more than just Whey Protein. There's many other vitamins you need along with the protein to be able to absorb it efficiently. Unless, you are already taking a multivitamin. Then you can probably just take it with the shake. And yeah, I tend to eat late too; I'm currently heating a pizza haha.

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I've actually found that the people in my life are more supportive than I expected them to be. I'm late for work and my co workers call me and wake me up and they aren't mad or anything. When I go see my mom and end up talking to her for 20 minutes and then sleeping for four hours she just kind of.. gives me a hug and makes me some coffee and sends me on my way.. When I make plans with my friends and then wake up hours after I was supposed to meet up with them and call them and explain that I was in a coma, they understand, and we reschedule for some later time.

I have no idea why people are so nice to me.

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I've actually found that the people in my life are more supportive than I expected them to be. I'm late for work and my co workers call me and wake me up and they aren't mad or anything. When I go see my mom and end up talking to her for 20 minutes and then sleeping for four hours she just kind of.. gives me a hug and makes me some coffee and sends me on my way.. When I make plans with my friends and then wake up hours after I was supposed to meet up with them and call them and explain that I was in a coma, they understand, and we reschedule for some later time.

I have no idea why people are so nice to me.

Some people have empathy. Even if they have never experienced what you are going through they can empathize, and gain some understanding. Other people have absolutely no empathy. In their mind if your arm isn't in a cast, or your're not covered in scars there is nothing wrong with you, and you should just get over it. Some of us are lucky enough to be surrounded by empathetic people. Most of us probably have a mix. Others are completely surrounded by people with no empathy whatsoever. Being surrounded by people with no empathy makes having a disorder like narcolepsy or fibromyalgia extremely difficult to deal with because it makes it so hard to talk to anyone.

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Some people have empathy. Even if they have never experienced what you are going through they can empathize, and gain some understanding. Other people have absolutely no empathy. In their mind if your arm isn't in a cast, or your're not covered in scars there is nothing wrong with you, and you should just get over it. Some of us are lucky enough to be surrounded by empathetic people. Most of us probably have a mix. Others are completely surrounded by people with no empathy whatsoever. Being surrounded by people with no empathy makes having a disorder like narcolepsy or fibromyalgia extremely difficult to deal with because it makes it so hard to talk to anyone.

It depends what kinda culture you're in. I know as a guy in the South, there's all this macho men culture and I'm pretty sure I'm widely perceived by my male counterparts as being a whiny emo wimp.

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Some people have empathy. Even if they have never experienced what you are going through they can empathize, and gain some understanding. Other people have absolutely no empathy. In their mind if your arm isn't in a cast, or your're not covered in scars there is nothing wrong with you, and you should just get over it. Some of us are lucky enough to be surrounded by empathetic people. Most of us probably have a mix. Others are completely surrounded by people with no empathy whatsoever. Being surrounded by people with no empathy makes having a disorder like narcolepsy or fibromyalgia extremely difficult to deal with because it makes it so hard to talk to anyone.

I agree with you. Some people have empathy and understand very well and others are completely clueless. Out of my circle of friends though, the only two people who seem to completely get it are my partner, who's mother and sister have been diagnosed with Lupus, and my adopted sister, who is struggling to get a diagnosis for an autoimmune disorder (Fibromiyalgia treatments aren't working for her at all and the symptoms don't match anyway...). They understand how it is that I just don't have the energy to deal some days, because they know others who have experienced it or have experienced it themselves. My sister and I both read a story about a woman who was diagnosed with Lupus and her struggle to explain it to a friend called "The Spoon Theory" that seems to parallel with our experiences. I'm attaching the link to this post. While I don't have to deal with pain like my sister does, I feel I can relate to this because I do have to consider just how tired I'm going to be after an activity or a long day. I have to plan out how I'm going to use my energy and time because I know that if I don't, I'm going to over do it and I'm going to have issues with sleep attacks or cataplexy. If I allow myself to get over stressed, same thing.

Do you feel this parallels with your own experiences with dealing with Narcolepsy?

The Spoon Theory

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I agree with you. Some people have empathy and understand very well and others are completely clueless. Out of my circle of friends though, the only two people who seem to completely get it are my partner, who's mother and sister have been diagnosed with Lupus, and my adopted sister, who is struggling to get a diagnosis for an autoimmune disorder (Fibromiyalgia treatments aren't working for her at all and the symptoms don't match anyway...). They understand how it is that I just don't have the energy to deal some days, because they know others who have experienced it or have experienced it themselves. My sister and I both read a story about a woman who was diagnosed with Lupus and her struggle to explain it to a friend called "The Spoon Theory" that seems to parallel with our experiences. I'm attaching the link to this post. While I don't have to deal with pain like my sister does, I feel I can relate to this because I do have to consider just how tired I'm going to be after an activity or a long day. I have to plan out how I'm going to use my energy and time because I know that if I don't, I'm going to over do it and I'm going to have issues with sleep attacks or cataplexy. If I allow myself to get over stressed, same thing.

Do you feel this parallels with your own experiences with dealing with Narcolepsy?

The Spoon Theory

It's a tad trite and contrived, but it is a fairly accurate assessment none the less. I often describe N to my gamer friends as having my Intelligence, Willpower, Endurance, and Constitution stats cursed by -30%.

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I don't have a diagnosis yet, but it looks like I have Narcolepsy. I've told 3 of my immediate family members. They've mostly been supportive, but the jokes have already started. Maybe the problem is that I've been the butt of many jokes because of my naps over the past 15+ years. It's to the point that one family member told one of their friends and was making jokes about it. That was pretty crushing for me.

I really don't want any sympathy or expect any special support. I just want people to understand that when I get sleepy, I just have to take a quick nap. I don't want a fuss or jokes, just please, please let me sleep without feeling different so I can enjoy being with everyone. But if my family can't even do that, how can I expect anyone else to?

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I don't have a diagnosis yet, but it looks like I have Narcolepsy. I've told 3 of my immediate family members. They've mostly been supportive, but the jokes have already started. Maybe the problem is that I've been the butt of many jokes because of my naps over the past 15+ years. It's to the point that one family member told one of their friends and was making jokes about it. That was pretty crushing for me.

I really don't want any sympathy or expect any special support. I just want people to understand that when I get sleepy, I just have to take a quick nap. I don't want a fuss or jokes, just please, please let me sleep without feeling different so I can enjoy being with everyone. But if my family can't even do that, how can I expect anyone else to?

Well the next time one of your family members gets a cut or a headache, just laugh at them and then be like "See, that's how it is when you make fun of my problems"

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Well the next time one of your family members gets a cut or a headache, just laugh at them and then be like "See, that's how it is when you make fun of my problems"

Like!

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