The Stupid Advice Thread

Index Support Center Forums Living with N The Stupid Advice Thread

  • This topic has 13 replies, 8 voices, and was last updated 3 months, 3 weeks ago by kgmelich87. This post has been viewed 651 times
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  • #4265
    TheRabbitKingTheRabbitKing
    Keymaster
    @deathrabbit

    A big part of Living With N is learning to deal with people you care about/doctors/random strangers disappointing you with their understanding about what you are going through. And the ones with the most, erm, shall we say, unenlightened views seem to be the most vocal. With that in mind, state the worst advice/recommendations/opinions on N that you have ever received?

    I’ll go first: Xyrem turned out to not be for me in the end analysis, but my first sleep doctor was a complete idiot about it. He was a pulmonologist, and when I mentioned maybe trying Xyrem at some point, he must have googled the wiki page or something having never heard of it before, because he was like “That makes no sense, why would I give you that? It’d just put you to sleep!” My mouth just kinda hung slack-jawed for a good 10 seconds after that. I fired him not long after that.

    My current jam: Anathema - Springfield

    #4269
    EnginerdEnginerd
    Participant
    @enginerd

    Wow, I can’t believe your sleep doctor said that. I can understand other doctors, maaaaybe…I mean, I had to explain Provigil to one of mine while asking him to prescribe it to me, and as he looked up the drug in his manual, he said, “Well, you know more about the drug than I do, so I trust your judgement!” I was a college student.

    I’ve heard a lot of stupid and insensitive “suggestions” and “input” from people over the years. The most insulting recommendation came right after I was diagnosed; my Mom informed her GP (who knew me since I used to be her patient when I lived in the area, as well) about my diagnosis and the GP was shocked and told my Mom that I should absolutely have another sleep study and MSLT done soon to “undo the narcolepsy diagnosis” since I “wouldn’t want that on my record.” I didn’t even know what to say when I heard that.

    My parents routinely drive me nuts by suggesting that if I were to eat better (without knowing my diet), that I would magically be cured. They seem to think that since I’m young, there’s no way I could have an illness aside from allergies. It’s beyond frustrating! They also act shocked if I’m visiting them and disappear to take a nap, or if I fall asleep while watching a movie. Suffice to say, my Dad really ought to know better given his background and experience in the pharmaceutical industry. Very disappointing.

    #4270
    Sk8aplexySk8aplexy
    Participant
    @sk8aplexy

    Not sure this is entirely fitting.

    A long time old friend, who’s sort of like a brother yet we’ve not interacted much in years, almost from right around my dx.
    It was after I, in excitement, described to him what I’d been dealing with, and in his presence, for years and years.
    That being Cataplexy, mostly minimal and moderate and maybe a few times I’d layed myself out to avoid collapse, but many times I’d had (what could be called) Cataplexy face – I can’t know if anyone really picked up on it, but I am sure it’s a thing. It is that facial expression between excitement and paralysis kicking in, a sort of face spasm; I know when I skateboard, to this day, it’s either at the end of a run, from the exhaustion, or it occurs from the pleasure of landing a trick especially or even just enjoying rolling.
    Anyways, I explained as best I could what Cataplexy was in both medical definition and from my own experiences. He responds saying that happens to me all the time when I’m drunk.

    I probably took it wrong and missed the intended pun, but it hurt a little. It goes much further with that friend, he lost respect for me and is a sort of mean guy, so I don’t interact much with him anymore, yet I still feel he’s sort of like a brother. We’ve always been good at ‘agreeing to disagree’ and have always had similar opinions and a very similar mindset, but we don’t see eye to eye many times when it comes to ‘care’ and whatever ‘being grounded’ may be or is…

    Separately, the first Neuro I saw in regards to N w/ C, for confirmation I wasn’t experiencing seizures, was so bad. She cut me off as I explained my Cataplexy experiences, to ask if I have a lot of regular anxiety, totally side tracking the conversation. I’d been, in the recent term having dramatically increasing amounts of Cataplexy, this was as I attempted the treatment she’d insisted on.
    At a other appointment with her, I ask straight up (along the following lines) what she can tell me about “Hypocretin, or Orexin, aren’t they the same and related to the symptoms I’m experiencing;” she proceeds with “what? I don’t know but you should stop reading the internet because there’s a lot more wrong than good to be read” (along those lines..).
    She also said “be ready to take the stimulants and antidepressant medications in 6 weeks when you return or we will be discussing your license;” that was it, I went to Mayo Clinic and got shit sorted out.

    It’s all hard for me.

    #4272
    TheRabbitKingTheRabbitKing
    Keymaster
    @deathrabbit

    My parents routinely drive me nuts by suggesting that if I were to eat better (without knowing my diet), that I would magically be cured. They seem to think that since I’m young, there’s no way I could have an illness aside from allergies. It’s beyond frustrating!

    That crap annoys me so much. I mean yeah, healthy diet is good and all and we even talk about diet all the time here as a way to minimize fatigue symptoms, but the whole attitude of “just go and eat gluten free pizza and you’ll be cured” is irritating, and also super insulting that they figure we’re such a retard we could have missed such a simple fix.

    My current jam: Anathema - Springfield

    #4273
    TheRabbitKingTheRabbitKing
    Keymaster
    @deathrabbit

    Not sure this is entirely fitting.

    She also said “be ready to take the stimulants and antidepressant medications in 6 weeks when you return or we will be discussing your license;” that was it, I went to Mayo Clinic and got shit sorted out.

    Wow, it never ceases to amaze me how trash doctors can be. I mean, I know there are tons of good ones and only the bad stories make it to the internet, but it’s “Jeez, first do no G*DD*MN HARM, COME ON!”

    My current jam: Anathema - Springfield

    #4274
    EnginerdEnginerd
    Participant
    @enginerd

    @Sk8aplexy Sorry to hear your friend was so insensitive; that was a really inconsiderate comment to make, even if he meant it in jest. He could’ve realized it bothered you and apologized, or asked for more details so he could better understand what you were going through. For what it’s worth, I’m 99.9% certain one of my best friends has completely forgotten I have narcolepsy. I told her years ago when I was first diagnosed, and I’m not sure she understood what it was? But now, every time I comment that I’m really tired, she replies with either, “You’re always tired!” or “Me too, I’m so tired.” Ugh.

    And your single doctor experience sounds like two separate experiences I had. One of my GPs couldn’t figure out why I felt so poorly all the time and didn’t “believe” in lots of tests and bloodwork, so she flat-out told me I was imagining a lot of my symptoms and probably had anxiety. When I explained I’m a very calm and patient person, and pointed out proof for some of my symptoms being real, she became frustrated and retorted, “Maybe it’s depression, then?” I told her that while I respected her medical opinion, she was wrong. She proceeded to punish me by removing my Provigil prescription which was, ironically, very much needed, as learned from a sleep study two years later. A neurologist I visited for a consultation around the same time responded similarly to your doctor when I started questioning him about my MRI results–this after he encouraged me to ask questions. He became angry and defensive when I used medical terminology and asked where I had learned those words and how I knew that information, then replied I shouldn’t know that. Honestly, it was because he couldn’t answer me and felt inadequate. He could’ve simply replied, “I don’t know” and that would’ve been alright. There are a lot of terrible doctors out there.

    @TheRabbitKing Seriously! I eat fairly well, and I even started going to the gym regularly this year, which is more than I can say for them. But it doesn’t matter what I do; they forever have this picture of me somehow causing my own sleep issues and have convinced themselves it’s all my fault. I’ll never win lol.

    #4294
    AvatarSleepy RBD
    Participant
    @sleepy-rbd

    Wow to all of the above…It can definitely be disheartening when others either don’t seem to understand or perhaps don’t even try.

    Here’s a couple of quick pieces of advice that I have received. I love the ones that start out with…If you would just….
    a) Go talk to someone, perhaps that would help. (Anyone know of a counselor that can revive dead brain cells? If so, please PM me.)
    b) Learn to control the triggers. (I’m getting better at recognizing these and trying to be as proactive as I can thanks in many ways to what I have learned from some of you guys; but unfortunately life is just not always predictable, just as this disorder is not.)

    On a positive note, I have a very dear friend who had a brother with NT1. After seeing what her brother experienced and what an effect the disease had on his life, she listens with a very understanding heart. She has stated more than once that she wishes that he and I could have talked about our experiences before he died. She thinks that maybe this would have helped him to not feel so alone. I am truly grateful for the family members and friends that do try to understand. I’m also glad that I found all of you!

    #4295
    AvatarNatdoc
    Participant
    @natdoc

    To All of you
    Please never pay attention to the ignorance of others this would include the Physicians with a brain and no sense. These folks only show their ignorance when they refuse to avail themselves of the information available on this disease.
    Myself, though I do not suffer from Narcolepsy and I cant imagine what life is like for you, I know that you continue to inspire me on a daily basis.
    I truly believe you are all special folks and the knowledge and guidance you provide on these forums is invaluable both to other people with Narcolepsy and to any provider who is smart enough to find you here
    All my best

    #4342
    JasonJason
    Keymaster
    @jasonm

    Worst thing I had was my dad coming to visit and leaving a printout about hypochondria on the table. Like I made up 2 MSLTs and falling asleep standing in the shower. I’ve received pretty much no support from anyone except my physician and this community (wuv you guys). I don’t ask for pity or bring it up even. I’d just like to be left alone about it by my family.

    I’ll add more when I have a second!

    #4355
    Sk8aplexySk8aplexy
    Participant
    @sk8aplexy

    @Jason

    Reading that, reminded me of when I visited my Father who I very rarely see, and his longtime lady partner.
    Her and I had an enormous falling out which rooted from a few totally separate things, but the trigger was related to my Brother and Father’s relationship (I didn’t want to give his address without his permission).
    Anyways, not long into the heightened interactions, she goes into saying that I only wear the (Cataplexy) bracelet to get attention and essentially that it’s all just in my head.
    She’d studied psychology (may even have a PHd in the field). She began throwing scholarly names out, then asking me super odd off the wall questions that for her had a bunch of meaning, because she thought she could read me or something.
    It was very unfortunate and so not necessary, damaging as well, I’m saddened that her health has declined (I believe the entire episode was slightly related to that unfortunately, too).

    Hopefully from that experience, at least reflecting on it now, perhaps I can learn something. Which, it seems like to be able to just brush such harsh words off, and be the bigger person right off the bat, may really avoid and/or reduce consequential heavyness or pain/s; yet ever hearing such sort of wording, hurts…

    #4375
    AvatarSleepy RBD
    Participant
    @sleepy-rbd

    @Natdoc
    Many thanks for your perspective…

    @Jasonm & @Sk8aplexy
    Who would want to make this stuff up? I definitely think that both of you guys have better things to do than make up an illness. It’s hard when people would think such a thing and be so insensitive.

    @TheRabbitKing
    This will probably be a thread that just “keeps on giving” as others think of things to add…

    #4419
    AvatarAthene
    Participant
    @athene

    Oh dear, I have several…

    – Good sleep hygiene will make it better.

    – We all work and have busy lives. We’re all tired. You just have to willpower through it when you’re tired.

    – Drink some [caffeinated beverage here].

    – Eat [whatever] or don’t eat [whatever].

    – Have you tried going to bed earlier?

    I appreciate that some people believe they are helping, and that’s fine (if a little frustrating). But some so-called suggestions are just plain dismissive sometimes.

    #4517
    JasonJason
    Keymaster
    @jasonm

    @sk8 gotta love people! It seems like society has been losing the capacity to have empathy as time passes. That or I’m becoming progressively more jaded!

    @sleepy rbd, I have no idea. I certainly would rather not have a sleep disorder!

    #12226
    kgmelich87kgmelich87
    Participant
    @kgmelich87

    I’ve been fortunate that everyone close to me has been very kind and supportive. It’s those that aren’t close to me that have said insensitive things. The worst one I got was when a friend of a friend asked if I was planning to have kids. I told her I hadn’t been able to carry to term and had had 2 miscarriages, likely due to incredibly poor sleep over the 5.5 years I’d had narcolepsy and the resulting hormonal instability of my body. She then said “well wait til you have kids, then you’ll really be tired”. She’s an RN so I figured she’d be more sensitive to the fact that I just told her all that….nope. I didn’t even try to explain to her that she doesn’t even know what tired is compared to PWN. Like talking to a brick wall.

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