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Family Doesn't Understand.


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#21 KCSleepyEmployee

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Posted 22 February 2013 - 02:52 PM

It's extremely hurtful, I know. Out of all my friends, I have 1 that has stood by me, and has really tried to understand what N is and the struggles that I go through. Truly, I think part of the issue is that sleepiness is something that everyone experiences to a certain degree, so when people say things like, "Oh man, I'm with you, I could barely crawl out of bed this morning!" Or "Yeah, I know what you're going through, I was so tired last week after this, that or the other, I could barely keep my eyes open!" We, with N, just want to shake them and scream, "NO, IT'S NOT THE SAME!" PWON cannot comprehend how we feel, because the only understand the concept of being overly exhausted for a short period of time, then they get their rest, and they feel better again.

There really isn't a great answer to how to deal with the hurt that comes from so many who misunderstand, or "poo poo" the disease as something minor. Eventually the people around you will open u and accept your N and all of its wonderful components, or you will have to accept that this is a fault of theirs, and their lack of understanding is not something you can change.

#22 sweetest_shone

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Posted 22 February 2013 - 06:16 PM

It's extremely hurtful, I know. Out of all my friends, I have 1 that has stood by me, and has really tried to understand what N is and the struggles that I go through. Truly, I think part of the issue is that sleepiness is something that everyone experiences to a certain degree, so when people say things like, "Oh man, I'm with you, I could barely crawl out of bed this morning!" Or "Yeah, I know what you're going through, I was so tired last week after this, that or the other, I could barely keep my eyes open!" We, with N, just want to shake them and scream, "NO, IT'S NOT THE SAME!" PWON cannot comprehend how we feel, because the only understand the concept of being overly exhausted for a short period of time, then they get their rest, and they feel better again.

There really isn't a great answer to how to deal with the hurt that comes from so many who misunderstand, or "poo poo" the disease as something minor. Eventually the people around you will open u and accept your N and all of its wonderful components, or you will have to accept that this is a fault of theirs, and their lack of understanding is not something you can change.



#23 sweetest_shone

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Posted 22 February 2013 - 06:31 PM

Yeah, I think you are right about everyone experiencing sleepiness to a certain degree. So it's not like, say epilepsy for example where everyone around you can relate to having seizures, etc.
Like I said before, this is all new to me. I do some research almost every night before bed. On here and other websites as well. Maybe with time it will get easier. But I must say, you are a better person than me. I applaud you for your patience with others around you. As well as your accepting of those that will never understand what you are going through as a PWN. I'm not so sure if I could do that last part.

#24 iturnedintoamartian

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Posted 20 May 2013 - 12:01 PM

I have to be honest about my situation. I have spent my life since my extreme sleepiness began (almost 15 years ago) being called lazy. From everyone. I have had very few good friends in my life because I never had energy to do the things they wanted. What 14 year old girl is too exhausted to go to the mall?! I don't even think my family will ever believe that I have an actual problem. 

The only thing that has helped me in the situation is explaining the more serious things I have experienced. I delivered newspapers up until recently which required me to sleep a few hours before work, work, then sleep a few hours after until my son woke up. I had to tell my mom about how there were more nights than I cared to admit that I had come very, very close to losing my life from drifting off while driving and how, on those nights, even after it happened, there was NOTHING I could do to make myself more awake. Even the adrenaline rush from almost dying was not enough to keep me wide awake for more than 5 minutes. Or how I didn't even remember driving home or had to turn around all the time because I didn't know if I had delivered a paper or not because I didn't remember. At that point, I think she understood that it's not just some type of "sleep issue". 

The best advice I can give is that some people will never WANT to understand, which is much different than merely not understanding. No one really gets it unless they've been there, but as long as they TRY to understand, that counts for something. My husband and I still argue sometimes about it, but he tries to keep my condition in mind. Still, sometimes, when I really think about it, it's absolutely heart-wrenching to me that those people can never truly feel how I do or notice how the smallest things are a herculean task. I don't think that will every go away. All you can do is hope you have more good days than bad and have something to work towards and some kind of outlet. It's imperative to have people around you that take narcolepsy seriously and want to understand how you feel and to limit your association with those that don't want to put the time or effort into knowing you. Which brings to mind one of my favorite quotes:

 

“Never waste your time trying to explain who you are to people who are committed to misunderstanding you.”



#25 sk8aplexy

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Posted 20 May 2013 - 02:37 PM

Such makes a lot of sense and I could not word such better: 

 

“Never waste your time trying to explain who you are to people who are committed to misunderstanding you.”

 

That would be a great one to have written on a card in my pocket at all times, to remind me during those rare interactions when I become fueled and deeply entangled in trying to do exactly what that says to never do.

 

The below is some venting:

This past week I had a horrible, intense, unfortunate and completely unnecessary interaction with a close sort of family friend.  She has a history (wrote a dissertation) in Psychology (need I say more!?) and she'd been a counselor, once.  She took no moment to reflect upon what she'd said/done, nor was she noting what she was actually doing; twisting and conniving.  No matter what I said, she knew everything and it was all on me (really it was pretty humorous but unfortunate as it was and may have created a wedge between my Father and I, her being the wedge); again she would not accept her own part.   Things got super twisted up as she made it some sort of 'we're out to help you' and 'we can not help if you're not willing to help yourself first'; it was total madness.  She actually made it quite clear to me, that what really matters to her, is money; that is, she kept asking me what my goals and dreams were, over and over asking me whether I agree with whatever convoluted question/s she asked, it revolved directly into money (somehow? I do not know, it made no sense) which was sick and gross (scary too)...  There were hours and hours of this mad talk, she just wouldn't let it go.  She at one point went into 'you have energy' and 'you wear that like it's a privilage' (regarding my medical bracelet that I wear for easing Cataplexy episodes in public);  I did all that I could to remediate the tensions and in the end, I left a bit early from the visit.  Not sure I can do that visit again, at least with her (being almost like a step mother) there.  It all had to do with my brother who has for years basically not wanted anything to do with them, I was almost in a way cornered into trying to take sides, by her (I'd never do such and she had no place to speak, she'd met him once like 20 years ago -sigh-).  Was very lame and definitely Drama'tic...



#26 DeathRabbit

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Posted 20 May 2013 - 04:29 PM

I have a song for people like that :P lol

 



#27 lkl

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Posted 23 May 2013 - 05:40 AM

I like the way this article by Julie Flygare, describes the sleepiness of narcolepsy:

http://julieflygare....ime-sleepiness/

 

At one point, she makes an analogy between hunger and sleepiness, then says, "Imagine being hungry but denied food for 48 to 72 hours. I’ve never gone so long without eating, but I would expect that the experience would reach dark places of mental and physical anguish. If I spoke to someone who hadn’t eaten in 48 to 72 hours – I wouldn’t say, “I know how you feel” because I missed breakfast yesterday."

 

I gave this article to my boyfriend, to read, and I think it helped him to understand. I keep meaning to show it to other family and friends, but haven't done so yet.



#28 Hank

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Posted 23 May 2013 - 07:45 AM

"To argue with a fool proves there are two"- a quote from my grandfather.

 

I remember this when faced with someone who has all the "answers" to Narcolepsy, but never asks any questions.

 

I spoke with a co-worker yesterday who just returned from maternity leave following her second child. She was up 3 times the prior night and was exhausted. I was empathetic, and have never discussed N with her. Everyone is very understanding of a new mother- it is socially acceptable for them to be exhausted. Somehow, N is different in the minds of most others.

 

My sister has no interest in understanding Narcolepsy. She holds the opinion that I am really Bipolar because of my ups and downs. That is an easier explanation for her to explain why I alternate between very productive and totally wiped out. I have to take care of my responsibilities when I feel well, so I can "crash" when I need to. That could appear Bipolar to the casual observer, but it is not correct. She holds the position that I am tired, like everyone else- when am I going to address the "real problem". Unfortunately, N is the real problem, and I am addressing it through lifestyle adjustments and medication.

 

It makes no sense to my sister that I am capable of competing in Triathlons and live with crushing exhaustion. For her, if I was so tired, I could not be as physically active as I am. And, if I can be that physically active, then I would have more energy. Welcome to my world- those contradictions never made sense to me until I received a correct diagnosis either.

 

So, I live my life in a way that I can manage- as husband and father, in my career, chores, hobbies, sports. How I get all this done is different from someone without N. It may leave others scratching their heads trying to figure me out- and, for me, they can go scratch.

 

They just do not understand- and I understand that.



#29 ravanzee

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Posted 23 May 2013 - 12:08 PM

My son was diagnosed a little over a month ago.  Both sides of our family witnessed the drastic change in him and agreed that something was wrong.  While everyone is very supportive of this whole thing, none of them really understand what is going on.  I have tried to explain that it will not just go away, but we continue to receive the comments.  In July my parents are watching my kids for a week, and I have tried to make it very clear to her that we have him on a schedule and that she needs to stick to it.  She has already made comments about what she thinks will help him and if we would just let him do this or that then it would probably go away.  It worries me for when he stays there, I guess the worst that can happen is he will be absolutely exhausted the whole time.  She doesn't think we should let him take naps during the day, he just needs to be more active.  Yes he does better when he is active, but he does hit a wall and will fall over asleep if you aren't careful. 

 

I am glad that everyone is concerned for him, I just wish they would read and learn about N.  I have given them the resources to do so.  We have just decided that there isn't a whole lot we can do to make them all understand but they see him enough to witness the difference from three months ago before this started to now.  I think them witnessing this drastic change has been the only way for them to start to see.  He literally went from being an energetic boy who had bounds of energy to waking up one day and being exhausted every day since.  Two weeks after the tiredness the cataplexy started, so it was not a gradual change in his body.



#30 DeathRabbit

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Posted 23 May 2013 - 02:17 PM

Everyone loves to put out their little "theories" on what's wrong. They seem to miss the part where we've already figured that out, hence the diagnosis, and it's not something green tea with honey in the morning will cure.



#31 jennel

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Posted 18 July 2013 - 12:08 AM

I just want to say thank you to everyone on this thread and forum. I'm new here, and I think I picked the wrong spot to begin (treatment), when I really needed to see this thread. I did a big ol' pity party/vent under treatment as I am trying to not pin all my hopes on Xyrem to make me "normal."

 

I thought it was so crazy how people didn't acknowledge my diagnosis or have any empathy/sympathy/care/give a good gosh darn....and their comparisons of their fatigue - oh ya me too! <Sigh>

 

But just reading through all your experiences with family etc. (few days ago my dad told me my "real" problem is just taking all this medicine.....mmm - hmmm. Ok thanks for the input, hey what's that? i.e. let's change the subject...) is actually so helpful. I've been really surprised by the lack of care or understanding but now I am seeing it is quite common.

 

My mom said to me years ago that she honestly thinks everything I've gone through (and this before the N dx) is harder than the MS she lives with. Wow. I hold on to that "validation." It would be nice to have people understand but I appreciate knowing I am not alone in that I will essentially be dealing with it alone (as far as those in my circles are concerned - I appreciate this forum to meet others with similar diagnosis).  Thanks.



#32 DeathRabbit

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Posted 18 July 2013 - 12:22 AM

MS runs in my family as well. It's been suggested that it and Narcolepsy are born of the same fruit and our situations seem to bear that out.



#33 jennel

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Posted 19 July 2013 - 10:27 AM

MS runs in my family as well. It's been suggested that it and Narcolepsy are born of the same fruit and our situations seem to bear that out.

Vewwwy intewesting.....I mean - seriously. I talked about it with my mom some today. Both require a genetic marker with an environmental trigger. MS attacks the mylin (can't remember how to spell) and narcolepsy attacks hypocretin. Both are auto-immune diseases and have roughly the same number of affected people. But it seems to me MS is much more socially known and accepted and better funded!! Funny how I know my dad would NEVER tell my mom to "just stop all her medicine because they are really the problem!"  



#34 DeathRabbit

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Posted 19 July 2013 - 10:49 AM

I've said this a few times before, but I wish Narcolepsy caused you to randomly bleed out of your fingertips or something. It'd be worth it to actually have a tangible symptom because, to most people, seeing is believing. I'm gonna quote the X-Files for the millionth time: "Your scientists have yet to discover how neural networks create self-consciousness, let alone how the human brain processes two-dimensional retinal images into the three-dimensional phenomenon known as perception. Yet you somehow brazenly declare that seeing is believing!"



#35 jennel

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Posted 19 July 2013 - 11:13 AM

I've said this a few times before, but I wish Narcolepsy caused you to randomly bleed out of your fingertips or something. It'd be worth it to actually have a tangible symptom because, to most people, seeing is believing. I'm gonna quote the X-Files for the millionth time: "Your scientists have yet to discover how neural networks create self-consciousness, let alone how the human brain processes two-dimensional retinal images into the three-dimensional phenomenon known as perception. Yet you somehow brazenly declare that seeing is believing!"

I think that's really the heart of why my mom said she felt my experience was more difficult than hers. Once her symptoms really started manifesting - and later in life than mine - my father was urging her to see dr's. Meanwhile, me - suffering narcolepsy since I believe anywhere between 8-14 as an onset - and having had "malaise" and various non-specific diagnosis as the dr's couldn't explain my symptoms (not all clear cut narcolepsy, but stemming I believe from a lack of quality sleep), he just thinks I'm a hypochondriac apparently.

 

I won't lie that it's my dad's attitude that pisses me off and frustrates me more than anyone.He so blatantly treats me differently (i.e. - Worse!) than any other member of the family. But I genuinely believe a lot of this is that I have some similar issues to his mom who suffered severe depression and the terrible side effects of medication available 60-70 years ago...I only hear little snippets - like he was maybe 7 years old and his dad went to work leaving him in charge of not letting his mother near the knives. So, in his defense, I get that he has some fear and doesn't know how to deal with me. 

 

Doesn't necessarily mean it doesn't hurt. But thank God, my mom is super kind and tender and loving and caring and she makes up a lot for him. ;)

 

But what I'm tangenting off of is - I thought that even before I knew what I had - I wanted somehow for people to see something to somehow realize how flipping hard it is sometimes! Grr....sigh. Think I'm mainly past that, but not 100%.  I'm really thankful to find this forum to see other folks living with various symptoms from narcolepsy and knowing ya'll are here and that SOMEONE gets it, well, it does help me. I'm sure I'll still have my ups and downs and I'd like to figure out how to just get those around me to realize that no, I am NOT able to do things the way you do - and it's NOT laziness or a lack of motivation.

 

For example, there's a gal at work who offered to mentor me. I don't enjoy playing politics but I do understand in corporate America, sometimes a little is necessary. So this gal is well respected and has good connections, but she expects me to get all these books and read a chapter a night and do all this homework on top of my job. And when I tried to explain to her I wasn't sure I could do all that she just came back with "her" experience, I was a single mom and worked two jobs so don't tell me you can't read a chapter a night!

 

So while I really would mostly love to just kinda throw her scrawny a** against the wall...I need to figure out how to negotiate this relationship because I know she is not going to be someone who will EVER understand or believe I have a health issue and were I say to somehow convince her, she would then tell people I would not want to know... so - as Hank said in a different thread - Darned if you do and darned if you don't!

 

Guess it's figuring out how to master  some of that Rudyard Kipling poem - If - "if neither foes nor loving friends can hurt you, If all men count with you, but none too much;" and "If you can trust yourself when all men doubt you, But make allowance for their doubting too; If you can wait and not be tired by waiting, Or being lied about, don't deal in lies, Or being hated, don't give way to hating, And yet don't look too good, nor talk too wise:"

 

Trying to find each day how to enjoy the journey. ;)