4 replies to this topic

[Remi]

I have my official diagnosis now since december. Strange but I always had a feeling of what it was. I think back to middle school and the times I was called lazy and fell asleep in class. After school I would get home and feel exhausted and sleep until late into the night. Today I mentioned to my sister that she should have my niece checked out due to similarities. Without knowledge of the condition automatic response was " she is not narcoleptic, she was up late last night" It really makes me sad on how close minded people can be, after knowing that my condition did not just happen over night.

[sk8aplexy]

Entirely Agree, the automatic responses can be painful and knowing if people could just open their minds a bit more, so much would likely be simpler.

One of my longtime friends, who I've been around since elementary school (am 33 now), a couple years back right after my discovering the terms and also getting the dx; responded to me, after telling him about Cataplexy causing me to collapse near immediately after some pleasurable interactions, with "that happens to me when I'm drunk, all the time." 

Basically, I decided at that point to limit the depth of speaking on the topic, with him...  Once he saw it occur though, I think he realized the extent of it, somewhat better.

It's like this disease forces some of us, perhaps many or most of us, to live extremely open minded due to the amount of inner-reflection and recognition that is required to just, be, with it. 

 

I do hope that your niece does not have it.

It's good that you are aware.

Time tells.

[sweetest_shone]

My mom is actually having a hard time with my N Dx. She just can't believe that I have something that has no cure, that I'll have for the rest of my life and that even WITH meds won't even make me 100%. She wasn't really taking me seriously at first, telling me to get a 2nd opinion and things like that. Then, I brought her a copy of the FMLA paperwork that was filled out by the Dr and she is just stunned. Now she is convinced that I going to be fired.
Anyways, this was suppose to be an example of how even some of our biggest supporters (mom) can be closed minded without meaning to. And it does or can cause a little damage.

[sweetest_shone]

I have my official diagnosis now since december. Strange but I always had a feeling of what it was. I think back to middle school and the times I was called lazy and fell asleep in class. After school I would get home and feel exhausted and sleep until late into the night. Today I mentioned to my sister that she should have my niece checked out due to similarities. Without knowledge of the condition automatic response was " she is not narcoleptic, she was up late last night" It really makes me sad on how close minded people can be, after knowing that my condition did not just happen over night.

[sweetest_shone]

My sister and I both think my 7 y/o niece has it. She isn't struggling yet. But my sis did tell me that she won't let it get that far before she was her checked. And that she hopes my nieces at least gets old enough to make her own decisions or can voice her opinion about how she wants to handle it. My niece has already had her tonsils removed b/c my sis took her to the dr when she was 4 b/c she was tired all the time and the dr said it was b/c she had large tonsils. So they removed them... It didn't help. This was long before I had my own N Dx.
Hopefully when your niece gets older you can talk to her an it will be her own adult decision to get checked out. Hopefully she won't struggle too much or hard before then.