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Annoying Reactions Of Friends/family/acquaintances To Narcolepsy


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#21 Elli of Nod

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Posted 09 December 2012 - 03:13 PM

Some people have empathy. Even if they have never experienced what you are going through they can empathize, and gain some understanding. Other people have absolutely no empathy. In their mind if your arm isn't in a cast, or your're not covered in scars there is nothing wrong with you, and you should just get over it. Some of us are lucky enough to be surrounded by empathetic people. Most of us probably have a mix. Others are completely surrounded by people with no empathy whatsoever. Being surrounded by people with no empathy makes having a disorder like narcolepsy or fibromyalgia extremely difficult to deal with because it makes it so hard to talk to anyone.


I agree with you. Some people have empathy and understand very well and others are completely clueless. Out of my circle of friends though, the only two people who seem to completely get it are my partner, who's mother and sister have been diagnosed with Lupus, and my adopted sister, who is struggling to get a diagnosis for an autoimmune disorder (Fibromiyalgia treatments aren't working for her at all and the symptoms don't match anyway...). They understand how it is that I just don't have the energy to deal some days, because they know others who have experienced it or have experienced it themselves. My sister and I both read a story about a woman who was diagnosed with Lupus and her struggle to explain it to a friend called "The Spoon Theory" that seems to parallel with our experiences. I'm attaching the link to this post. While I don't have to deal with pain like my sister does, I feel I can relate to this because I do have to consider just how tired I'm going to be after an activity or a long day. I have to plan out how I'm going to use my energy and time because I know that if I don't, I'm going to over do it and I'm going to have issues with sleep attacks or cataplexy. If I allow myself to get over stressed, same thing.

Do you feel this parallels with your own experiences with dealing with Narcolepsy?

The Spoon Theory

#22 DeathRabbit

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Posted 11 December 2012 - 12:13 PM

I agree with you. Some people have empathy and understand very well and others are completely clueless. Out of my circle of friends though, the only two people who seem to completely get it are my partner, who's mother and sister have been diagnosed with Lupus, and my adopted sister, who is struggling to get a diagnosis for an autoimmune disorder (Fibromiyalgia treatments aren't working for her at all and the symptoms don't match anyway...). They understand how it is that I just don't have the energy to deal some days, because they know others who have experienced it or have experienced it themselves. My sister and I both read a story about a woman who was diagnosed with Lupus and her struggle to explain it to a friend called "The Spoon Theory" that seems to parallel with our experiences. I'm attaching the link to this post. While I don't have to deal with pain like my sister does, I feel I can relate to this because I do have to consider just how tired I'm going to be after an activity or a long day. I have to plan out how I'm going to use my energy and time because I know that if I don't, I'm going to over do it and I'm going to have issues with sleep attacks or cataplexy. If I allow myself to get over stressed, same thing.

Do you feel this parallels with your own experiences with dealing with Narcolepsy?

The Spoon Theory

It's a tad trite and contrived, but it is a fairly accurate assessment none the less. I often describe N to my gamer friends as having my Intelligence, Willpower, Endurance, and Constitution stats cursed by -30%.

#23 stoic

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Posted 12 December 2012 - 08:41 PM

I don't have a diagnosis yet, but it looks like I have Narcolepsy. I've told 3 of my immediate family members. They've mostly been supportive, but the jokes have already started. Maybe the problem is that I've been the butt of many jokes because of my naps over the past 15+ years. It's to the point that one family member told one of their friends and was making jokes about it. That was pretty crushing for me.

I really don't want any sympathy or expect any special support. I just want people to understand that when I get sleepy, I just have to take a quick nap. I don't want a fuss or jokes, just please, please let me sleep without feeling different so I can enjoy being with everyone. But if my family can't even do that, how can I expect anyone else to?

#24 DeathRabbit

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Posted 13 December 2012 - 05:56 PM

I don't have a diagnosis yet, but it looks like I have Narcolepsy. I've told 3 of my immediate family members. They've mostly been supportive, but the jokes have already started. Maybe the problem is that I've been the butt of many jokes because of my naps over the past 15+ years. It's to the point that one family member told one of their friends and was making jokes about it. That was pretty crushing for me.

I really don't want any sympathy or expect any special support. I just want people to understand that when I get sleepy, I just have to take a quick nap. I don't want a fuss or jokes, just please, please let me sleep without feeling different so I can enjoy being with everyone. But if my family can't even do that, how can I expect anyone else to?


Well the next time one of your family members gets a cut or a headache, just laugh at them and then be like "See, that's how it is when you make fun of my problems"

#25 Megssosleepy

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Posted 14 December 2012 - 01:06 PM

Well the next time one of your family members gets a cut or a headache, just laugh at them and then be like "See, that's how it is when you make fun of my problems"


Like!

#26 munky

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Posted 15 December 2012 - 01:21 AM

Well the next time one of your family members gets a cut or a headache, just laugh at them and then be like "See, that's how it is when you make fun of my problems"


As Meg said: Like!