6 replies to this topic

[cori]

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!

[tdmom]

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?

[severianthegreat]

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.

[VincentOCMD]

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

[sleepywriter]

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.

[Emo]

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

[Lucestrife]

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.