32 replies to this topic

[wisher]

Yesterday I went over to my parents' house to visit. My mom asked me how my sleep studies went (I just had the follow-up appt a few days ago). I told her it was inconclusive, and that they were testing for narcolepsy. My parents asked me what narcolepsy is, so I explained. In the middle of my explanation, my dad just says "Wisher, you don't have that, don't speak that over yourself, rebuke that, blah blah blah..." and pretty much dismisses the rest of my explanation.

Like many family members of PWN, it seems, they keep trying to explain away my symptoms.
"You're just stressed." "You need to change your diet." "Are you going to bed at a proper time?" "Make sure you take vitamin B-12." "You should exercise more."

And no matter how many times I explain to them that my diet is amazing, I've tried EVERY energy boosting product on the market (most didn't work, some worked for like 2 days, then stopped working), I try to exercise (but often I am too fatigued/sleepy to do so), etc. they never accept what I say as valid.

I'm all for natural remedies and adjusting my daily habits in order to maximize my health, but when all of those things STILL don't fix the problem, it's time to accept that there IS a problem. And they're not even offering to pray for me, they just tell me to basically use my will power and positive thinking to get over it.

I didn't even bother telling them about the cataplexy because I knew it would just open a whole new can of the same stupid worms. Sigh.

I know there's probably a million threads just like this one already, but I had to vent. Does anyone have suggestions for how to deal with this?

[The Mom]

Yesterday I went over to my parents' house to visit. My mom asked me how my sleep studies went (I just had the follow-up appt a few days ago). I told her it was inconclusive, and that they were testing for narcolepsy. My parents asked me what narcolepsy is, so I explained. In the middle of my explanation, my dad just says "Wisher, you don't have that, don't speak that over yourself, rebuke that, blah blah blah..." and pretty much dismisses the rest of my explanation.

Like many family members of PWN, it seems, they keep trying to explain away my symptoms.
"You're just stressed." "You need to change your diet." "Are you going to bed at a proper time?" "Make sure you take vitamin B-12." "You should exercise more."

And no matter how many times I explain to them that my diet is amazing, I've tried EVERY energy boosting product on the market (most didn't work, some worked for like 2 days, then stopped working), I try to exercise (but often I am too fatigued/sleepy to do so), etc. they never accept what I say as valid.

I'm all for natural remedies and adjusting my daily habits in order to maximize my health, but when all of those things STILL don't fix the problem, it's time to accept that there IS a problem. And they're not even offering to pray for me, they just tell me to basically use my will power and positive thinking to get over it.

I didn't even bother telling them about the cataplexy because I knew it would just open a whole new can of the same stupid worms. Sigh.

I know there's probably a million threads just like this one already, but I had to vent. Does anyone have suggestions for how to deal with this?

My son is a teenager who was recently diagnosed. I have been spending some time reading old posts, trying to understand it all. There has been numerous posts lamenting about family and friends not understanding and being supportive, so you are not alone. It seems like having them read literature about Narcolepsy doesn't seem to be well received. I have been thinking a lot about this issue too because I know my husband feels my son is just lazy and not trying hard enough. It is difficult to get people to understand who are just a bit (or a lot) closed minded. I feel like there needs to be a well made, informational documentary about Narcolepsy for people to watch, one that really captures the struggles and explains the medical reasons behind it. I think my husband might respond better to a documentary than if I just handed him a book about it. I started to search but didn't get very far (just watched some youtube ones... not exactly what I had in mind.) Anyone out there know of any?

[wisher]

My son is a teenager who was recently diagnosed. I have been spending some time reading old posts, trying to understand it all. There has been numerous posts lamenting about family and friends not understanding and being supportive, so you are not alone. It seems like having them read literature about Narcolepsy doesn't seem to be well received. I have been thinking a lot about this issue too because I know my husband feels my son is just lazy and not trying hard enough. It is difficult to get people to understand who are just a bit (or a lot) closed minded. I feel like there needs to be a well made, informational documentary about Narcolepsy for people to watch, one that really captures the struggles and explains the medical reasons behind it. I think my husband might respond better to a documentary than if I just handed him a book about it. I started to search but didn't get very far (just watched some youtube ones... not exactly what I had in mind.) Anyone out there know of any?

I wish I knew of some. The problem, for me, is that my narcolepsy isn't as severe as that of people who are in the documentaries. Of course, they only make documentaries about people who are extreme. So my parents would watch it and say "well, you don't fall asleep every 10 minutes like that person, so you don't have narcolepsy." You know what I mean? It's such a delicate thing, and I only wish I knew a better way to approach it. Maybe a documentary would work for your husband. I think a book might actually work better for my dad, because he loves to read. Hrmm...

[okami]

I definitely know what you're experiencing. When I first told my dad about how tired I am, he suggested that it could be a spiritual problem (I'm atheist and he's hardcore Christian, same as mom). I made sure he changed tactics after that one. Now he only suggests that if I lose weight, I wouldn't be tired anymore. I would have all the energy I could want.

Granted, losing weight would make me a little less tired probably but nothing significant. The reason he's so adamant about it is that he had undiagnosed diabetes for a few years and he was exhausted from it. When he got that under control with diet and exercise, he wasn't tired anymore. Now he thinks it's a cure-all.

Here's two docs I found quickly. I don't know how to get them or how reputable the first site is, though.
http://www.factualtv.com/documentary/A-Sleepy-Life
http://www.bbc.co.uk/science/horizon/2003/narcolepsy.shtml

I wish I knew of some. The problem, for me, is that my narcolepsy isn't as severe as that of people who are in the documentaries. Of course, they only make documentaries about people who are extreme. So my parents would watch it and say "well, you don't fall asleep every 10 minutes like that person, so you don't have narcolepsy." You know what I mean? It's such a delicate thing, and I only wish I knew a better way to approach it. Maybe a documentary would work for your husband. I think a book might actually work better for my dad, because he loves to read. Hrmm...

[Enginerd]

I wish I knew of some. The problem, for me, is that my narcolepsy isn't as severe as that of people who are in the documentaries. Of course, they only make documentaries about people who are extreme. So my parents would watch it and say "well, you don't fall asleep every 10 minutes like that person, so you don't have narcolepsy." You know what I mean? It's such a delicate thing, and I only wish I knew a better way to approach it. Maybe a documentary would work for your husband. I think a book might actually work better for my dad, because he loves to read. Hrmm...

My mom said almost the exact same thing to me yesterday! "You're not falling asleep right now, so apparently you're not THAT tired." Then, I fell asleep before she did last night while watching a movie even though I woke up two hours later than her that morning and was less active. I still don't think it struck her as odd, though.

My parents are both very quick to dismiss this diagnosis as being legitimate because I visited a bunch of specialists during the past three years, which turned up multiple diagnoses (several of which are legitimate but I probably could have lived without knowing or treating, like PCOS and acid reflux). They take everything with a grain of salt when it comes to me and my health, despite the fact that I've been complaining about incredible fatigue for a long, long time as one of my top three worst symptoms. Given that I'm not an extreme case of narcolepsy, my dad doesn't actually believe I have it, and my mom thinks the diagnosis might be incorrect. Neither of them understand why I sleep around 10 - 15 hours a night, yet remain consistently tired throughout the day. I fear narcolepsy is really one of those diseases people will never understand without actually going through it themselves because feeling "tired" or "fatigued" is so commonly used in society today. This kind of fatigue is unparalleled, though! It's NOT the same and I don't know how to communicate it to anyone--family or friends--without them replying, "Oh, I'm tired too." And forget about trying to explain minor episodes of cataplexy.

It's so frustrating.

[angeline]

I am always amazed at how insensative people can be when you try to tell them about what you are going through with these blasted illnesses! Why would we make up or exaggerate or fake this stuff? It's miserable to live like we do. Do they realize that when they disregard the seriousness of our condition it makes us feel unloved? It's alright if they don't fully understand how the whole thing works but can they try to understand that we are human beings with feelings that are truly hurt when they treat us like this disease is one of the easy ones to manage. Do they care that we go home or to our room and cry ourself to sleep? Do they really want us to feel rejected and all alone in the world because of something they said to us? I thought they LOVED us? Why is it so hard to say "Well son/daughter I don't fully understand what you're going through but I'm here for you if you need me. I love you."? Are they so concerned about being embarrased that I'm connected to them that they can't muster true concern? I just don't get it. Are they afraid I'll have a spell while I'm out in public with them and embarrass them in front of their so called friends? If their friends are truly friends they would be concerned for anyone who is related to them, don't you think? Well, that's enough ranting i guess...

Just for the record, I am a born again believer in Jesus Christ and I find it apalling for anyone who calls themself a Christian to treat the sick with lack of compassion. Jesus said when we visit the sick it is as though we have visited him (Matthew 25:34-40)...

Done ranting 4now,
Angeline

[wisher]

So on Saturday I went over to my parents' house to do laundry and spend some time with my mom for Mother's Day a bit early. While we were sitting around, I fell asleep on the couch. When my mom came back in the room, she came over to me all concerned, asking me what's going on and if I'm like this all the time. I told her yes. It's just like how it was a few years ago when all this started. (It seems that when I was diagnosed with hypothyroidism and PCOS, the medications gave me a bit of a boost/placebo and I was able to function a bit better for the next year.) I told her how sleepy and fatigued I am all the time and that I take naps a couple times a day, etc. She seemed to finally realize that there was a problem and was concerned. And then she says "Well, it must be stress, don't you think?"

I just sighed.

[Enginerd]

So on Saturday I went over to my parents' house to do laundry and spend some time with my mom for Mother's Day a bit early. While we were sitting around, I fell asleep on the couch. When my mom came back in the room, she came over to me all concerned, asking me what's going on and if I'm like this all the time. I told her yes. It's just like how it was a few years ago when all this started. (It seems that when I was diagnosed with hypothyroidism and PCOS, the medications gave me a bit of a boost/placebo and I was able to function a bit better for the next year.) I told her how sleepy and fatigued I am all the time and that I take naps a couple times a day, etc. She seemed to finally realize that there was a problem and was concerned. And then she says "Well, it must be stress, don't you think?"

I just sighed.

Hah! I have hypothyroidism and PCOS, too, but I only take a low dose of medication for the former. I was discovering so many medical problems in my quest to figure out why I was so fatigued and having trouble thinking that I had to pick and choose which ones were really causing issues and needed treatment. I fall asleep on the couch really easily, especially if I'm watching TV. I think my mom is too tired herself to notice, or doesn't think much of it. I don't know how to get through to my family short of having a mental breakdown in front of them...and even then, they'd probably chalk up my sleeping problems to insanity and ship me off to the looney bin.

[angeline]

I guess they have to get narcolepsy or some other debilitating illness to understand. It's too bad they don't just take our word for it.

[Lucestrife]

Nothing beats a definitive diagnosis. The fact is, until you have one, you can't even be sure that N is your condition. If you have test results and doctors to confirm them on the other hand, that's a lot of data to back you. I too had parents who were sick of hearing about my medical problems and didn't believe me when I was diagnosed. It didn't last long however. I agree that good documentaries are hard to come by since they don't quite capture the range of experiences, but I've always found that really going over the symptoms (how it isn't always apparent to outsiders (or even to yourself) when you fall asleep, etc) is what really makes a longstanding difference. Just my 2 cents.

[wisher]

Nothing beats a definitive diagnosis. The fact is, until you have one, you can't even be sure that N is your condition. If you have test results and doctors to confirm them on the other hand, that's a lot of data to back you. I too had parents who were sick of hearing about my medical problems and didn't believe me when I was diagnosed. It didn't last long however. I agree that good documentaries are hard to come by since they don't quite capture the range of experiences, but I've always found that really going over the symptoms (how it isn't always apparent to outsiders (or even to yourself) when you fall asleep, etc) is what really makes a longstanding difference. Just my 2 cents.

The point is that there IS a problem, even if it turns out NOT to be Narcolepsy, and my parents think I should just "not speak that over myself" and buck up.

[Lucestrife]

The point is that there IS a problem, even if it turns out NOT to be Narcolepsy, and my parents think I should just "not speak that over myself" and buck up.

Well yes, and I completely agree, and feel your pain. I've had two diagnosed conditions for years and some (more mystically-oriented) members of my family still don't believe it. The point is that until you have a diagnosis, it's going to be hard to disprove their silly ideas about your lifestyle, but once you do it will shut people up with a quickness. Hang in there, it does get better.

[Enginerd]

I guess they have to get narcolepsy or some other debilitating illness to understand. It's too bad they don't just take our word for it.

Couldn't have put it better myself! It's a real shame.

[Enginerd]

Well yes, and I completely agree, and feel your pain. I've had two diagnosed conditions for years and some (more mystically-oriented) members of my family still don't believe it. The point is that until you have a diagnosis, it's going to be hard to disprove their silly ideas about your lifestyle, but once you do it will shut people up with a quickness. Hang in there, it does get better.

I have several legitimate diagnoses (PCOS, hypothyroidism, narcolepsy, migraines, RVOT tachycardia) and ironically the only diagnosis my mom admits she believes is my migraine diagnosis, which is the only one that cannot actually be proven through bloodwork or a lab test! It really boggles my mind...but because I've had doctors point out some other smaller issues (pineal cyst, mild arthritis in small joints, acid reflux, possible transient ischemic attacks brought on by migraines) she is overwhelmed by the number of problems I've mentioned at one point or another over thee past few years, so both she and my dad choose to question the very diagnosis and downplay the seriousness of narcolepsy. It's like I don't really have narcolepsy in their minds.

I never went to a doctor for anything besides a bad cold until my early-20s, so I probably had a bunch of those conditions long before they were discovered, and it's possible not having them diagnosed and treated sooner led to some of my other problems, like the heart arrhythmia. I'd had headaches since I was a child, but I didn't bother getting them treated, or my allergies, until I started seeing doctors for my other symptoms that led to narcolepsy diagnosis. All these sudden health revelations caused my parents to view me as a hypochondriac...when I'm not at all. Maybe I should've waited to treat some of the stuff I knew I had but held off on treating to appear less...sick.

I also had a very stressful final year of college when the fatigue became unbearable, and I visited the doctor for an onset of symptoms that were never explained. All of that stress probably awakened a host of autoimmune diseases (PCOS, hypothyroidism), which my parents don't understand. I come from such a great pedigree lol...

[wisher]

Enginerd, I am in a very similar situation. PCOS, hypothyroidism, and a lot of other things that either I or one of my doctors has suspected. My parents just seem to have gotten bored with my health issues and don't want to take me seriously or think I'm a hypochondriac or something. And, well, ever since my mother was diagnosed with lung cancer and "God healed her", they are of the mindset that all one has to do is refuse to believe a diagnosis or symptom and it will stop existing. it frustrates me because they seem to look around at everyone else in pity or something. My uncle died of horribly metastasized skin cancer last year, and it's like the whole time they felt compassion but also felt annoyed/disappointed that my aunt and uncle didn't have enough "faith" for him to be healed by God or whatever.

I just wish they would look at me and take me seriously and understand MY position. What do you do if you think God should be healing you but you don't get healed (like my mom's breast cancer)? You go to the doctors and ask them for help. Anyway, I'll stop ranting now. Thanks for sharing your stories and advice, everyone. Community rants can be therapeutic.

[Lucestrife]

...And, well, ever since my mother was diagnosed with lung cancer and "God healed her", they are of the mindset that all one has to do is refuse to believe a diagnosis or symptom and it will stop existing. it frustrates me because they seem to look around at everyone else in pity or something. My uncle died of horribly metastasized skin cancer last year, and it's like the whole time they felt compassion but also felt annoyed/disappointed that my aunt and uncle didn't have enough "faith" for him to be healed by God or whatever.

Wow. Yeah, that is sick. My parents aren't quite that bad. I knew an anthropologist once who studied the entire "illness = sin" phenomenon in the Christian community. At least they still believe in doctors and modern medicine...even if they don't think they have anything to do with helping people? That sounds like a nightmare. I'm sorry that you have to deal with that. For my own health I think I would distance myself when possible, if I were in your position.

[angeline]

Sometimes we should say something like "Ouch! There's a heart in here and you're breaking it." Maybe they don't realize how the things they say and do are tearing us apart, isolating us and even sometimes making our symptoms worse.

[Enginerd]

Sometimes we should say something like "Ouch! There's a heart in here and you're breaking it." Maybe they don't realize how the things they say and do are tearing us apart, isolating us and even sometimes making our symptoms worse.

That's definitely how it feels, but my parents are really logical and they'd probably roll their eyes and say, "Oh come on, Enginerd...stop being so dramatic!" I do have some (sort of common) heart issue, actually, so that's not too far from the truth lol!

[Insomniac Mama]

Wow, this post really caught my intrest. I know that this post is from many months ago but just wanted to add a little perspective. My husband has N and I didn't fully understand it when we met. I am also a Christian and so is my husband. Give your parents time and prayfully they will come around to understanding your illness better. Once they know what you are dealing with then that will help guide them in their prayer time with you or for you. When my husband and I first got married (married for a long time now) my husband took xyrem and had really bad night terrors. DON'T under estimate prayer. I would lay hands over him (for the non-christians, all that means is I lovingly placed my hand on his shoulder, head, ect. to pray). I would pray for him. It took a while but he now doesn't have any night terrors. So I understand what your parents are saying by rebuking the devil. All they are (I think) trying to say is to pray. Since you are not officially diagnoist with N I feel like what they are trying to say (but not doing a very good job at it) is don't speak negativity over you life until you know for sure. You really need to find out if you have this. Tell your parents that the truth will set you free. I truely believe that it means more then just salvation. It's only when things are exposed God can come in. If they are true Christians they will not want to hide their head in the sand and keep rebuking the devil. That just glorifing the devil not God. God is all about honoring truth. If the truth is you have this illness then yes God can heal it. Or he can choose not to heal it. Sometimes God allows things in our life to draw us closer to him. Faith is the substance of things hoped for the evidence of things unseen. If (any reader) doesn't have faith in God you will never understand what I just said. So please no commentage if you have no faith in God.
I hope that I have helped shed some light on your situation. Many do NOT understand this disease. It has taken me a long time to get it. I am still learning too but this is an area I think I can help bring a clearer picture too. Good Luck and let us know how things are going.

[DeathRabbit]

I've said it before and I'll say it again. I wish narcolepsy came with like a whole bunch of boils or you started randomly bleeding out of your fingertips or something. People just don't take an illness seriously unless they can see it. It's even worse for me because I don't have cataplexy, so I can't even collapse in front of anyone to bolster my cliam.