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#1 cori

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Posted 26 November 2011 - 04:06 PM

Has anyone else had the problem where there husband doesn't believe the diagnosis? My husband has been treating me as if I am lazy, and I need to just shape up and get moving. He finally just confessed to me that he doesn't believe in my diagnosis of narcolepsy. He stated that he thinks I am just out of shape and could get over it if I was able to lose weight and excercise. He compared me and my narcolepsy to the contestants on the biggest loser and all of the diseases they over came through weight loss. Mind you, I am only 5' and 160lbs. It's not like I am morbidly obese, and even if I was, that has absolutely no revelence to this diagnosis.

I was just wondering if anyone has ever dealt with anything similar, and how you got through it? This has definitely put a huge strain on our marriage.

Thank you for any help or guidance in advance! :)

#2 tdmom

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Posted 26 November 2011 - 10:45 PM

Have you paid the dues for a membership to Narcolepsy Network? The book you receive in the mail is extremely helpful. Has he been to your neurologist with you?

I do not have Narcolepsy my son does and I can see people treating him this way already - he is 16! Invisible diseases are soooo hard for people to believe.

My understanding of weight and Narcolepsy is that a Narcoleptics metabolism slows down and makes it very difficult to maintain a normal weight.

What meds are you on?

#3 severianthegreat

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Posted 28 November 2011 - 10:19 AM

Cori,

That's a tough one, but something most of us with narco can relate to. I'm not married, but most of the rest of my family has disbelieved me or worse. And none of them even did a google search on narcolepsy or hypocretin/orexin. I've found that most people need time to get used to the idea, but if you're strict and consistent in following treatment and see an improvement, most will at least begrudgingly accept it. For me, my determination to find/follow treatment and an aversion to people feeling sympathy for me both helped my case.

Remember that it's a hard thing for someone to swallow. People just aren't geared to put themselves in the position of someone who's suffering. And it must be very hard for a spouse to accept that the person they know has a life long disease. If he's a logical fixer-type personality, it may even help to get him to research narcolepsy and hypocretin/orexin using google scholar or similar. That helped win over a few of my friends.

best wishes and keep on posting here and talking to people!

Eric

ps - low hypocretin does much more than make you sleepy as it is used throughout the body. tdmom is right that it very often promotes being overweight by slowing metabolism and at least one study indicated that it promotes the production of adipose tissue.

#4 VincentOCMD

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Posted 30 November 2011 - 11:00 AM

Thats tough. I was diagnosed about six months ago. My wife says she gets it and tries to be supportive but its still so fresh and wierd and new her 'compassion' is at times insulting, telling me she doesnt want me doing simple things that i am fully capable of. So i can not relate as much in the relationship aspect but i have had intense ridicuole because of n. Ive been active duty military for almost 4 years now. When i first went to my supervisors to give them a heads up that i was going to go see a psycologist because of my paralysis they claimed that i was on drugs and demanded i take a drug test. Blown away, i did a tour in afghanistan and am decorated, until this time it was mostly praise when my name came up. I went through hell for a couple months until i got a diagnoses after the sleep studys. After i got my diagnoses, even worse hell. You can imagine the typical cold approach that they had to offer. Something along the lines of "So you supposedly have n? im tired too, should i go to the doctor" it went on for months and i just brushed it off because im now getting a medical discharge and the paperwork should be all done in a couple moths. I ended up talking to a lawyer and getting reassigned for the rest of my time on active duty.

I look at what i just typed and yes it seems like i was just venting(maybe i was just a little) but there was supposed to be a point. Some people dont want to understand. A lot of people have preconceived notions that are so far from the truth that it blows your mind. You obviously love your husband and im sure he is not a bad guy. Im not saying to get a lawyer, but im saying that this is not something that you want to be too passive about. Im not saying to jump down his throught and yell at him either, im saying that unfortunatley it may take a lot of effort on your part to make the necessary information about n available to him. The worst thing that could happen is ( im just playing devils advocate) he, or any one for that matter, could potentialy somehow make you feel like its your fault or your just unmotivated and lazy. So i would just be patient with him and make the information available, go to doc. appts. together. And do not let a single person make you feel less then what you were before all this stuff started happening, your the same person your just really tired and have really bad dreams

#5 sleepywriter

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Posted 30 November 2011 - 11:49 AM

Has anyone else had the problem where there husband doesn't believe the diagnosis? My husband has been treating me as if I am lazy, and I need to just shape up and get moving. He finally just confessed to me that he doesn't believe in my diagnosis of narcolepsy. He stated that he thinks I am just out of shape and could get over it if I was able to lose weight and excercise. He compared me and my narcolepsy to the contestants on the biggest loser and all of the diseases they over came through weight loss. Mind you, I am only 5' and 160lbs. It's not like I am morbidly obese, and even if I was, that has absolutely no revelence to this diagnosis.

I was just wondering if anyone has ever dealt with anything similar, and how you got through it? This has definitely put a huge strain on our marriage.

Thank you for any help or guidance in advance! :)


Wow, I'm so sorry your husband isn't being as supportive as he should be. I concur with the other replies - he needs to go to your next appointment with you. My husband went with me last time, and it really helped him understand the complexities of the disorder and what it means for me, and for him. I think it also helped it become more "real" for him. It's easy for someone on the outside to look at us and think we're just not trying hard enough because narcolepsy is so invisible. If the doctor is willing (which they should be) to show your sleep study and point out the SOREMPs and such, it might help your husband to understand and SEE that it is very, very real.

My father is still in disbelief, and he still says I just need less stress in my life and maybe some antidepressants. He does not understand that narcolepsy is not a mental disorder no matter how many times I tell him or how many pieces of literature and links to web sites I send him. To deal with him, I usually avoid the subject unless he brings it up to ask how I'm doing. When he does ask, I'm brutally honest.

I will say that exercise plays a huge ruge role in managing symptoms - at least for me. I run almost every day. The energy I get from accomplishing a good workout or a long run with a decent time is better than any jolt from any stiumulant.

#6 Emo

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Posted 01 December 2011 - 10:37 PM

Here are some observations I used to write about on the ol' Nlist.

1) In some (a few) ways, N is hardest on the spouse. They must carry a load that is not their own. The load being (probably) that the PWON must accept extra work and responsibilities, while at the same time the PWON could easily gain relief by simply walking away from it. To stay and shoulder the load requires a dose of self discipline. It is understandable for a PWON to feel some degree of resentment.

But you should gnash not thy teeth about the unfairness of it all, but rather find ways to give thanks to hubby, whenever it is even slightly earned. This will probably earn you more respect and tolerance than any attempts to explain or educate.

2) There is no way that people can "understand." At least without risking depression. It can't be understood really. I'll bet most of you often get quite upset by the stupid things done by stupid people around you. Yet do you "understand" what it might be like to be stupid? It might be that they are stupid because they lack intelligence, don't you think. That's an awful condition to be in yet the mentally slow people are subject to a lot more intolerance than we are. Can you "understand" and forgive stupidity? Well, if you can, then you will agree with what I am saying here.

3) This is a genuinely new thought for me: .......Well, crud. I went off to watch Jeopardy for a moment and forgot my big important thought.... Ohhhhhh yeah ..... The way you are now is the way you will always be, no matter what is said or whatever is done, barring a medical miracle. This fact must be accepted. If it can be respectfully accepted by hubby it would be nice indeed, but if not, the fact will still remain.

I'm an expert on these things. I've been divorced at least twice. So I know what doesn't work. Then, concerning what DOES work, of course I'm just faking it.

======================

I tell you about My Lady and me. She is, of course, a great believer in all those virtues that cause me grief; hard work, attention to the date and time and other details, eating the right stuff, vitamins, exercise and a positive attitude etc. In the beginning she was often at odds with odd me. Hurt feelings when my foggy brain fogged right past important dates or lost track of time or didn't get it done, whatever it was. She knew very well that I could do things for her and/or do things with her if she was actually important to me. Oh dear.

Then one day I attempted to DO something active. Like we would fly to Los Angeles and I'd actually try to attend a NarNet conference and meanwhile she could get out of the house and maybe see the sights. Two birds, one stone sort of thing. This ended up being a smart move. She became interested in attending a NarNet talk session on diet (she tended to think that this dumb narcolepsy could be overcome with proper nutrition). Next we attended a talk by Dr. Seigel. The exposure to the science, the watching of people nodding off at the wrong time, even striking up a friendship with other PWN, all of it was the most convincing evidence. This education went beyond any defensive explanations (excuses) I had to offer or my attempts to educate or force "Understanding."

Well I believe that she now totally believes in and accepts my narcolepsy. She still doesn't like it. Well, neither do I!

And about exercise. My Lady often speaks of gaining energy by exercising. I know that Audrey is a great believer and Ann Austin too. Seems strange to me. It only makes me tired. Exercise? You'll never get ME on the stuff!!!

Well, there it is!
Emo
Reporting from Fort Mudge, Idaho

#7 Lucestrife

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Posted 29 January 2012 - 05:48 PM

I dunno, it's my opinion that some people on this board are way too easy on the "nonbelievers". I think it's due to the fact that many of us are living in post-modern, baby boomer America where cultural relativism is the norm and being skeptical of scientific truth is somehow acceptable. That's my hypothesis anyway.

I just wanted to throw in my two cents, as a caretaker of a PWN (we share this account): You're the victim here. Your husband presumably knew you when he married you. If you're like most PWN then you've been struggling with this condition since you were younger. You've been the one struggling with all kinds of weird problems that undercut your self esteem and abilities, not these other healthy people around you who conveniently sit in judgment. Decent, civil people will always try to educate themselves and not presume that you're trying to "pull something over on them". That's just the sad truth of it. When my partner's Narcolepsy started to get reeeally bad, he was hallucinating like crazy, unstable, extremely depressed, randomly violent due to the hallucinations...just out of control. I would come home not knowing whether he was still alive or in the house, and often as not he'd have done something like emptied all of the drawers on the floor, and be yelling at me because he had no memory of having done anything like that. It has been a long, hard road for us, but I stuck with him because I realized very quickly how to differentiate the disease from the man. I did my research, as and after he finally got a diagnosis. Now with the proper medication all of that is gone and he's the same man I met seven years ago. The transformation has been miraculous. My point is, it doesn't sound like you're even presenting half as much trouble. People have to define their own limits, but at a certain point the onus is on the partner to be involved enough, to care enough, to figure out what is actually going on and do their best to help. I wouldn't tolerate people who supposedly care about me trying to make me feel as though I've created my genetic disorder. I wouldn't tolerate someone treating me like a second-class citizen in my own house. My partner can't do the same level of work as I can, so we have shifted our responsibilities slightly, and some work he just does when he can/feels up to it. It works for us. Everyone needs to find a pattern in life that works for them. But I guess what I'm saying is that you're a worthwhile person and you deserve to be treated with respect, trust and dignity. Narcolepsy is insidious in that it starts to eat away at people's self confidence early on, from what little I've seen.

#8 Monstreline

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Posted 14 July 2015 - 07:26 AM

Has anyone else had the problem where there husband doesn't believe the diagnosis? My husband has been treating me as if I am lazy, and I need to just shape up and get moving. He finally just confessed to me that he doesn't believe in my diagnosis of narcolepsy. He stated that he thinks I am just out of shape and could get over it if I was able to lose weight and excercise. He compared me and my narcolepsy to the contestants on the biggest loser and all of the diseases they over came through weight loss. Mind you, I am only 5' and 160lbs. It's not like I am morbidly obese, and even if I was, that has absolutely no revelence to this diagnosis.

I was just wondering if anyone has ever dealt with anything similar, and how you got through it? This has definitely put a huge strain on our marriage.

Thank you for any help or guidance in advance! smile.gif


Hi Cori,

It seems you posted this a few years ago, I'm new here and I can completely relate. I don't have a dx other than EDS at the moment.

When I first met my husband, I was working two jobs; roughly 80-90 hours per week and I was still making extra time to see friends. Both of my jobs were in the service industry and very physical. I was always able to stay awake as long as I was moving. When I was doing something more sedate, like hanging out with friends, I would drink an obscene amount of coffee and smoke A LOT of cigarettes to keep me awake. My sleepiness was pronounced at that time, but at a far more manageable level than now.

That was 14 years ago. When we moved in together I was working a job where I had to be at work for 5am every morning, I was managing the busiest Starbucks in my city...so my job resembled running track for 9-10 hours a day...the track was just shaped like a coffee shop.
As time went on I started to need naps after these long shifts that started so early. He was convinced that my afternoon naps were the reason why my night time sleep was broken up and insisted I stop napping so that I could have better "sleep hygiene". I stopped the naps, mostly because I hate conflict and I hate disappointing people. By 11am on my work days, I was so tired that consistently I felt like I was in a smoky room...my vision took on the quality of looking through smoke, but not really blurry (it sounds strange, I'm not sure how to describe it). I would get so tired that I felt sick to my stomach!

I started hiding naps. I would tell my husband that I was working late or seeing friends and I would go to my Mother's house and have a nap on her couch. Sometimes I would just get on a bus that had a very long route and just sit in one of the back seats purely so I could sleep. At the end of the route, I would get on the return bus, do the same thing and then transfer to a bus that would take me home.

Eventually I became very depressed. I played a heavy role in my own depression by not being confident enough to trust my own judgement about what I needed. Eventually my depression was so bad that I had to take a leave of absence from work for three months. My husband had thought that I was lazy before...now he thought that I was REALLY LAZY!

I've been going on long enough so I won't get into the additional drama that has ensued since that leave of absence other than to say that we have finally reached a point where I take my naps at home. The naps still upset my husband quite a lot and the atmosphere in the house is quite tense for the first hour after I wake up...he usually won't speak to me unless it about something essential.

When my doctor initiated my first sleep study, it was for sleep apnea and it was positive...my husband was okay with this because my snoring was keeping him awake at night. When my sleep do followed up about my energy levels after three months on CPAP and decided to pursue an MSLT.

I didn't get a diagnosis of N or IH only a confirmation that I am indeed sleepy. My husband thinks that the whole thing is ridiculous and that if I just worked out more and lost weight I would be fine.

* I am 5'7" and 200lbs, the weight has only really started to pile on as the sleepiness has gotten significantly worse. I am very active; I run, I play sports...I just keep gaining weight. My husband is vegan, so all the food that we eat at home is low in fat, and when I eat out, I focus on quality food rather than quantity.

On top of the napping, my husband finds the drugs very upsetting. I have been taking an anti-depressant for close to 4 years now and it is a point of much frustration for him. When he found out that my sleep doc had prescribed Ritalin, he was really upset.

When my friends and family have trouble understanding, it doesn't bother me that much...I don't really get into the details, I don't rally have any details to give them. I just tell them that I am simply not built for staying awake long periods the way they are...we're just different. But I find it really hard to cope with when the person I married and live with everyday thinks so little of me for having trouble staying awake.

Sorry to go on and on...if you have any solutions that improved your situation between you and your husband, please share with a new girl!

#9 Ferret

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Posted 14 July 2015 - 08:07 AM

I know you don't want me to answer but you need to send your hubby the link to this board. HE is being emotionally abusive which imho is just as bad as physically abusive.

You can't control the weight BECAUSE you're N and BECAUSE you're on an anti-depressant.

Maybe he should shut his mouth and start learning something about how difficult it is for you. If he's not interested then you have YOUR answer.



#10 Monstreline

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Posted 14 July 2015 - 08:16 AM

I know you don't want me to answer but you need to send your hubby the link to this board. HE is being emotionally abusive which imho is just as bad as physically abusive.
You can't control the weight BECAUSE you're N and BECAUSE you're on an anti-depressant.
Maybe he should shut his mouth and start learning something about how difficult it is for you. If he's not interested then you have YOUR answer.


Hi Ferret
I think that's why I have been trying so hard to get a dx one way or another...as though I could say "see! I have N, leave me alone!" Except I didn't get a diagnosis of N and I'm not good at telling him to back off and that I know what I feel or need. My fault, not his. I guess I'm looking for a dx as the easy way to end the argument.

Then again, he thinks that 'depression' is a B.S.-catch all...It would be silly for me to think that an N diagnosis would convince him.

Your advice is good. I have always struggled with confrontation. On a rational level I understand that just because someone doesn't agree with me, doesn't mean that I'm wrong...my deeper instincts tell me that others are always right and I am always wrong.

I do CBT activities everyday to improve myself and I have improved A LOT...but I still allow myself to capitulate far too often.

#11 purpley

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Posted 14 July 2015 - 10:05 AM

Hi Ferret
I think that's why I have been trying so hard to get a dx one way or another...as though I could say "see! I have N, leave me alone!" Except I didn't get a diagnosis of N and I'm not good at telling him to back off and that I know what I feel or need. My fault, not his. I guess I'm looking for a dx as the easy way to end the argument.

Then again, he thinks that 'depression' is a B.S.-catch all...It would be silly for me to think that an N diagnosis would convince him.

Your advice is good. I have always struggled with confrontation. On a rational level I understand that just because someone doesn't agree with me, doesn't mean that I'm wrong...my deeper instincts tell me that others are always right and I am always wrong.

I do CBT activities everyday to improve myself and I have improved A LOT...but I still allow myself to capitulate far too often.

 

Ferret's right.  It sounds like there are really serious communication issues between you and your husband, and he not only doesn't listen to you, but is treating you with contempt.  It's almost impossible to repair a relationship when one person always treats the other with contempt -- there has to be mutual respect in order for both to make the effort to make things work when there's a problem.  But, if this isn't the way that he's always treated you, and there are other positive and loving elements to your marriage, then there's hope.  You should insist on couples counseling, and you should be getting your own therapy in any case.  If he won't go to couples counseling, just focus on taking care of yourself.



#12 DeathRabbit

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Posted 14 July 2015 - 10:33 AM

Hi Cori,

It seems you posted this a few years ago, I'm new here and I can completely relate. I don't have a dx other than EDS at the moment.

When I first met my husband, I was working two jobs; roughly 80-90 hours per week and I was still making extra time to see friends. Both of my jobs were in the service industry and very physical. I was always able to stay awake as long as I was moving. When I was doing something more sedate, like hanging out with friends, I would drink an obscene amount of coffee and smoke A LOT of cigarettes to keep me awake. My sleepiness was pronounced at that time, but at a far more manageable level than now.

That was 14 years ago. When we moved in together I was working a job where I had to be at work for 5am every morning, I was managing the busiest Starbucks in my city...so my job resembled running track for 9-10 hours a day...the track was just shaped like a coffee shop.
As time went on I started to need naps after these long shifts that started so early. He was convinced that my afternoon naps were the reason why my night time sleep was broken up and insisted I stop napping so that I could have better "sleep hygiene". I stopped the naps, mostly because I hate conflict and I hate disappointing people. By 11am on my work days, I was so tired that consistently I felt like I was in a smoky room...my vision took on the quality of looking through smoke, but not really blurry (it sounds strange, I'm not sure how to describe it). I would get so tired that I felt sick to my stomach!

I started hiding naps. I would tell my husband that I was working late or seeing friends and I would go to my Mother's house and have a nap on her couch. Sometimes I would just get on a bus that had a very long route and just sit in one of the back seats purely so I could sleep. At the end of the route, I would get on the return bus, do the same thing and then transfer to a bus that would take me home.

Eventually I became very depressed. I played a heavy role in my own depression by not being confident enough to trust my own judgement about what I needed. Eventually my depression was so bad that I had to take a leave of absence from work for three months. My husband had thought that I was lazy before...now he thought that I was REALLY LAZY!

I've been going on long enough so I won't get into the additional drama that has ensued since that leave of absence other than to say that we have finally reached a point where I take my naps at home. The naps still upset my husband quite a lot and the atmosphere in the house is quite tense for the first hour after I wake up...he usually won't speak to me unless it about something essential.

When my doctor initiated my first sleep study, it was for sleep apnea and it was positive...my husband was okay with this because my snoring was keeping him awake at night. When my sleep do followed up about my energy levels after three months on CPAP and decided to pursue an MSLT.

I didn't get a diagnosis of N or IH only a confirmation that I am indeed sleepy. My husband thinks that the whole thing is ridiculous and that if I just worked out more and lost weight I would be fine.

* I am 5'7" and 200lbs, the weight has only really started to pile on as the sleepiness has gotten significantly worse. I am very active; I run, I play sports...I just keep gaining weight. My husband is vegan, so all the food that we eat at home is low in fat, and when I eat out, I focus on quality food rather than quantity.

On top of the napping, my husband finds the drugs very upsetting. I have been taking an anti-depressant for close to 4 years now and it is a point of much frustration for him. When he found out that my sleep doc had prescribed Ritalin, he was really upset.

When my friends and family have trouble understanding, it doesn't bother me that much...I don't really get into the details, I don't rally have any details to give them. I just tell them that I am simply not built for staying awake long periods the way they are...we're just different. But I find it really hard to cope with when the person I married and live with everyday thinks so little of me for having trouble staying awake.

Sorry to go on and on...if you have any solutions that improved your situation between you and your husband, please share with a new girl!

He needs a swift kick in the junk it sounds. Being angry because someone naps is just stupid, narcolepsy or not. The idea of sleeping in bulk once a night is pretty much a modern construct anyway that's only been around since the first industrial revolution, when everyone started becoming obsessed with productivity and all that jazz.



#13 sleepingmonkey

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Posted 14 July 2015 - 12:38 PM

I just want to make sure I understand...he's mad because, in his head, if you nap during the day, it is his opinion that it is disrupting your sleep at night? And because he has determined that this is the case, and already sees it as a fact, that you going against it is dumb and that you're doing nothing to help yourself. Seems like he's upset that you haven't taken his "fix" and run with it. Which is stupid, because you did try it, and it didn't work; in fact, it made you more sleepy. I don't see him offering any other suggestions, since his first one was sh*t and didn't work...

 

His behaviors make me really angry. I'm not an angry person! But it's really rude and disrespectful for him to not even speak to you because you have taken a nap. I would question where his anger is coming from...is it really about the napping and sleepiness, or is he unhappy in the relationship for other reasons and this is what he's choosing to be mad about? How is the sleepiness and napping negatively affecting your life with your husband? Like, what is being taken away by you napping for an hour? Is he mad because it takes away time that you could be spending together? If so, was he mad when you were just coming home late because you were sleeping at your mom's house or on the bus? Or was he OK with missing the time together so long as he thought you weren't napping? I guess I am just trying to figure out what actually pisses him off about it. Does he even know?



#14 Ferret

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Posted 14 July 2015 - 10:11 PM

@ Monstreline...

I'm only posting this to make you laugh.

I was telling my hubby about your hubby's attitude. My hubby was born and raised in Ottawa on Powell Avenue in The Glebe...

 

Hubby said "she should just tell him to F#@k OFF".



#15 Monstreline

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Posted 20 July 2015 - 12:22 PM

@ Monstreline...
I'm only posting this to make you laugh.
I was telling my hubby about your hubby's attitude. My hubby was born and raised in Ottawa on Powell Avenue in The Glebe...
 
Hubby said "she should just tell him to F#@k OFF".


Hillarious! I actually live not far from there...SMALL WORLD!