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My Boyfriend Refuses To Believe I Have Narcolepsy


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#1 FallenAsleepAtTheHelm

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Posted 02 July 2013 - 10:40 PM

Let me start by saying I love my boyfriend very much and we are great together. We've lived together for over a year and have been together for almost 2.
That being said, his opinion matters to me, and I really need his support. But about 6 months ago I was diagnosed with narcolepsy after undergoing a sleep study. The sleep study started at 11 p.m. and ended at 6 a.m. and since I was used to going to sleep at about 2 a.m. and waking up at about 1 p.m. I didn't fall asleep until about 4 a.m. so I got about 2 hours of sleep and no data was recorded. But since the passing out episodes I described to my doctor exactly matched cataplexy he decided to prescribe me Ritalin.
I told my boyfriend that the sleep study yielded no results but decided not to tell him about the ritalin at first because he is very against drugs and I knew he would view it as recreational drug use. so I was taking 20 milligrams of Ritalin ER every morning but nothing changed, and my excessive daytime sleepiness was just as intense, so I decided to stop taking it and the very next day I experienced an episode of cataplexy which usually only occurred once every few months before taking Ritalin. So I called my doctor and he told me to double the dosage since my body was clearly depending on the Ritalin in some way.
After doing this, the results were unbelievable. I was able to function at work and speak to people without projecting some sort of bad mood and I was just an all around happier person. After about a month of this I told my boyfriend that I was taking Ritalin. At first he acted like he didn't care, but shortly afterward he got very upset about it and treated me like I was a drug addict.
Ever since I told him that the sleep study yielded no results, he thinks that the whole thing is nonsense. when I tried telling him that my doctor wouldn't prescribe me ritalin unless I actually had narcolepsy he just says that doctors prescribe things all the time to people that don't need them. And even after the countless lists of symptoms I've read to him that match my life perfectly, even going all the way back to when I was a young child, he still thinks that I'm making them up or that I'm exaggerating and being dramatic. He has even been present when I've experienced cataplexy and since it wasn't to the full extent of me falling on the floor he pretends to act as if it never happened and that I was just a little tired and put my head down because I needed a nap.
I've gotten in trouble a lot of times with school, family, jobs and relationships for being moody and "having a bad attitude" when all my life I was just struggling with having no energy and being physically depressed which caused me to come off as rude or irritated. My boyfriend doesn't seem to be able to re-evaluate these times as my having a disorder. He's under the impression that it is I had narcolepsy I would be falling asleep all the time all over the place and basically wouldn't be able to function like a normal human ever.we have had many disagreements and arguments over my attitude and I think this is the reason that he can't accept that it wasn't entirely my fault all the time.
but the hard part about convincing him is that my doctor never did give me a 100% " you have narcolepsy diagnosis", he just prescribed me medicine based on what I was telling him and it ended up working but I have no paperwork or document stating that I have narcolepsy so what should I do?

#2 lkl

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Posted 03 July 2013 - 04:49 AM

It's really hard, when the people you rely on the most for support, don't accept a medical diagnosis that has a big impact on you. Narcolepsy is so misunderstood, and a lot of the symptoms are invisible to others. PWON often think that our sleepiness is the same as the sleepiness they experience, which makes it hard for them to see it as being caused by a medical condition.

 

Is it possible for you to take your boyfriend with you to an appointment with your sleep specialist? Maybe hearing the doctor explain his reasons for your diagnosis and him prescribing Ritalin, might help him accept it.

 

There is a helpful letter at the start of this section, that you could give to him: http://narcolepsynet...ont-understand/

 

You could also consider showing him some of the posts on this site, so he could see other people's stories about what narcolepsy is like for them. That might help convince him, that narcolepsy isn't always like the stereotype narcolepsy of falling asleep all the time all over the place. Also, I know you said you have read lists of symptoms to him, but have you given him written information for him to read himself?

 

Looking at it from another angle, maybe he could be in denial that someone he cares about has a serious medical condition, and it it easier to convince himself and you that it isn't real.  Either way, perhaps with time, he will become more accepting.



#3 Ferret

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Posted 03 July 2013 - 09:12 AM

Excellent post Iki!

I read FallenAsleepAtTheHelm's post last night and it made me very sad. You really need a supportive person in your life to help you get through this. They're the ones who will be honest enough to tell you if a certain medication is affecting you (and them) negatively. Together you can sort it out.

Your boyfriend really needs to read this forum and educate himself about Narcolepsy. I sincerely hope that he makes the effort for you and your relationship. Fair weather friends and family members do no one any good. 



#4 Hank

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Posted 03 July 2013 - 12:41 PM

As a husband, I don't have a lot of respect for your boyfriend right now. Maybe it is a process of acceptance for him which is understandable. I hope you keep him in the status of boyfriend before promoting him to husband or father. I am not saying to ditch him while you have so much going on. However, I think he needs to step up his game. Drug addict....really?

Since my diagnosis, I have been fine with people who do not understand- I can accept that. I have a definite problem with those who think they understand it completely and do not- I will not accept that. I will explain- I will not convince.

#5 FallenAsleepAtTheHelm

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Posted 03 July 2013 - 09:52 PM

Iki and Ferret, thank you so much for the support. You're right about PWON thinking that our sleepiness is the same as theirs. I have heard my boyfriend make several statements indicating that but I really need to get it through his head that it's not the same at all. And I don't know if my doctor would bring him into the office with me, because we're not married.

Hank, I am not going to defend my boyfriend in this instance, because although he has been extremely loving and supportive through many other aspects of my life, he is not there for me in this one, and it's huge to me obviously. I often have to scramble for other words when I'm about to say "because of my narcolepsy" in front of him or anything involving N. Simply because of the way he treats me when it comes to the topic. I choose to avoid an argument by pretending my N doesn't exist like he does because I'd rather not deal with him making me feel invalidated.
I think by taking so much upon my shoulders my whole life, I inadvertently caused him to think I'm not dealing with much because I'm stronger than I appear. The last time we spoke about Narcolepsy, I broke down and started flat out sobbing because I've been struggling with so much on my own. I told him that getting out of bed in the morning and socializing with people takes such a tremendous effort and I get such horrible anxiety that I'm not gonna be good enough for my boss or my co-workers or friends or hin because I don't always know how to behave like normal people when I'm still struggling with ghe basic smile and say "hello". I told him I need his help and understanding so I could stop feeling so g-d guilty for being unmotivated or seeming cranky toward him when he didn't deserve it. Because the guilt was tearing me apart, especially when I knew I was trying my hardest to be pleasent and socially acceptable for him and it STILL wasn't working all the time.
But the only conclusion he drew was that I was depressed. And that that's why I have no energy or motivation, because of a mental disorder. This made me angry and frustrated because I had put it so many different ways for him and he still refused to see that I am depressed in a way, but it's because of a PHYSICAL disorder and the strain it puts on my psyche daily.
I know he has problems when it comes to confronting stressful situations, but it doesn't seem fair to me that I have to hide it for him because he won't open his eyes and accept it. And I continue to deal with it alone.
All I know right now is that things go well if I don't bring it up... :/

#6 lkl

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Posted 04 July 2013 - 06:15 AM

 And I don't know if my doctor would bring him into the office with me, because we're not married.

I think that as long as you give permission for your boyfriend to be at the doctor's office with you, then it shouldn't matter that you're not married. If you wanted to be sure, you could ring and check with the receptionist ahead of time.



#7 Jed Badley

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Posted 04 July 2013 - 04:28 PM

I agree with IkI. Bringing him in and having the Doctor explain it to him could help a lot. I had a similar issue with friends and family, because i was diagnosed without cataplexy. I wouldn't have believed it either, but i had two sleep studies that showed that my REM and sleep cycles were really messed up.



#8 DeathRabbit

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Posted 05 July 2013 - 02:39 PM

I gotta say, it seems like he is being extremely close minded and unsupportive.  :(  Even if my SO had been diagnosed with something I didn't think she had, I would still try to support whatever medical treatment her and her doctors opted for. That's not to say I would hide my personal opinion on the matter, but it is possible to disagree and yet still support a loved one. That's what a relationship should be; two people teaming up against the world to kick its ass and watch each others backs. Doubting you to the point of putting you in tears or accusing you of drug seeking behavior is definitely unacceptable You need to make it clear that his negativity is not helping and not how a loved one should treat another. I know such a confrontation will be hard, but you don't want to just continually leave the elephant in the room without addressing. Suppressing major issues in a relationship has always been a bad plan, in my experience. But yes, bringing him to the doc might be enlightening for him. Also, if he insists on being in denial, tell him to go do some research on his own. Basically be like "Well, you think I'm wrong, then prove it! Prove it's not narcolepsy!" Because the research he finds will overwhelmingly back you up. That's just my 2 cents, and I obviously I don't know your relationship more than you've told, but it's what I would do if I were in your shoes or at least I hope it's what I would do. I hate confrontations with loved ones. It's easy to have it out with someone you hate, but it's really rough when it's someone you care about. I've been incredibly lucky that my girlfriend has been so supportive. I do wish she would perhaps a take a little bit more time to inform herself of my illness, but she believes me when I attribute symptoms to N and has been much more forgiving than I feel I deserve. I too, feel the self-hate and guilt for my N symptoms, so I'm constantly amazed that anyone would want to be with me at all. Just do your best to remind yourself it's not your fault when you feel guilty. But at the same time, never stop pushing yourself. Just as much as he owes it to you to be supportive, you owe it to him and yourself  to do your best to overcome. Sorry, I'm a bit tired and I know this post has been kind of rambling, but I hope you two get stuff figured out. :)