Jump to content


Photo

When / Who Do You Tell


  • Please log in to reply
3 replies to this topic

#1 Lauraviv

Lauraviv

    Member

  • Members
  • 2 posts

Posted 03 December 2012 - 10:54 PM

I have only told my husband and my Mom. Recently, my husband confided that he told his immediate family, and they were not supportive. Both of our families will ask me all about my newest Dx - gastroparesis. They're reading about it online, how am I doing, sorry your stomach still hurts, etc. Yet, nothing at all about N, RLS, or Fibro. Getting iron transfusions alarms them though! Why the selective empathy?

I've been thinking its my fault because I don't talk about it. I'm afraid if I say anything I'll be upset if they are dismissive. Should I give people the benefit of the doubt, be more trusting and open about what's going on?

Who do you tell and when?

#2 munky

munky

    Member

  • Members
  • 213 posts
  • Gender:Female
  • Location:near Little Rock, Arkansas
  • Interests:Too many to list. It takes up too much space.

Posted 04 December 2012 - 03:17 AM

For myself, I told all of my friends and family (posted on Facebook, 'cause that's the easiest way), and they have been very supportive and understanding. I continue to post there about my progress, because I know they're interested. I don't know how many of them may have decided to do any research on their own, but some have asked me questions and appear to have processed the answers. However, I have a very close-knit family. My parents were in the Navy, and we moved a lot when I was growing up, even after they were both out of the military, so all we really had in any stable way was each other. I didn't make any good friends until I was in my teens and actually spent more than a year (sometimes it was as little as 6 months) in the same school, and when I moved out of state after graduating from high school, I lost touch with most of them.

I stayed in the same general area for 17 years after that move, and made some very good friends who are much like family there, whom I've remained in touch with even since moving out of state again. I've also made some new friends in the new state who are like family. My family and friends are scattered around the country now, but we stay in touch and keep up with what's happening in each others lives, and most of their responses were along the lines of "That explains so much!"

It also helps that my mother, who retired and came to live with me the last time I moved, was diagnosed with narcolepsy herself several years ago. She no longer takes medication for it because, as she says, "I'm retired. I can sleep whenever I want." But she understands exactly how I felt, how I feel on the medication, and how I feel when I don't take it or have a bad day.

I also told one of my co-workers, who was helping me keep track of sleep attacks befor the diagnosis, and has also agreed to let me know if he sees them again now that I've started the meds. His desk is right beside mine, so it's easy for him to see if I do have an attack. He has also been very supportive and understanding, both in the months it took to get the diagnosis and since. He could see how much it was bothering me and how much I was struggling, and he was willing to listen. Thankfully, when I go to the 12-hour shifts, he and I will still be working mostly the same days. We'll alternate on the weekends, but since that's only one day a week, I'm not worried about it. I can only think of one other co-worker I may tell. She isn't a direct co-worker--we work in the same department, but support different accounts--but she is also a friend. We don't get a lot of time to talk, lately, so I haven't had a chance to talk about it with her, but I have a feeling she'll be as supportive and understanding as everyone else has.


And I told my direct supervisor, while making arrangements for my scheduled naps. He's also been very supportive, and for much the same reasons as my co-worker. He could see how much it bothered me when I realized I really was falling asleep at work. He could see how worried I was that it would start happening while I was driving, since I wasn't even noticing it when it happened. And he has backed me 100%.

Finally, I mentioned it in passing to my Trig professor the other day. Thursday night had been a bad night and by class time Friday morning, I was feeling kind of scattered and loopy. In learning how to graph polar coordinates on our calculators, one of the graphs looked very much like a butt. He told the class he was surprised not to hear any smart-aleck remarks about the graph, since he generally gets at least one from every class, and this class is mostly male. As a result, one of the three girls in the class confessed that she'd texted her boyfriend, in the same class, "It looks like a butt!" Everyone got a good laugh out of that, and I confessed that I'd had a hard time not laughing. He says, "Oh, in this class, it's the women!" After class, I told him, "If it helps to restore your faith any, I'm narcoleptic. And when I'm having a bad day, like today, I tend to be very easily amused." He laughed and said that, yes, it did help. I suspect, from the look on his face, that it also explained the couple of times I've nodded off in his class, though he's never mentioned them since I'm doing so (surprisingly) well.

I've read a lot of people's stories on here about family, friends, co-workers and bosses that just don't understand and aren't supportive, and I can't imagine how hard it must be for them to deal with, on top of everything else. It's hard enough as it is! Especially for those who aren't as lucky as I've been in finding medication that works right away! All I can really say in that case is, we're here for you even if they are not.

--munky

#3 SeeBee

SeeBee

    Member

  • Members
  • 27 posts
  • Gender:Female
  • Location:San Francisco, CA
  • Interests:Traveling, gardening, online gaming, crafts of all kinds, and the pursuit of knowledge.

Posted 04 December 2012 - 05:52 PM

I have only told my husband and my Mom. Recently, my husband confided that he told his immediate family, and they were not supportive. Both of our families will ask me all about my newest Dx - gastroparesis. They're reading about it online, how am I doing, sorry your stomach still hurts, etc. Yet, nothing at all about N, RLS, or Fibro. Getting iron transfusions alarms them though! Why the selective empathy?

I've been thinking its my fault because I don't talk about it. I'm afraid if I say anything I'll be upset if they are dismissive. Should I give people the benefit of the doubt, be more trusting and open about what's going on?

Who do you tell and when?



I find that most people are genuinely curious, and want to understand your conditions and how they might help you with it, but don't want to offend you by asking, or simply don't know what to ask - crossing my fingers that your in-laws are like this! Try talking about it, maybe sending them an easy-to-digest article or two, but still keep a little bit of armor up just in case. There are a few unfortunate folk out there that will tell you "nothing's wrong with you/tough it out/you're not trying hard enough," and then criticize you for taking medication. 90% of the time they have no idea what they're talking about, but it can be hurtful all the same, especially if you have to deal with them on a regular basis.

I told my family and close friends pretty much straightaway, as they'd have found out sooner or later anyway, and I tell whoever else needs to know (my professors, HR, my boss) as soon as I can, so no bad associations get made and they can accommodate me accordingly. I wait a bit longer to tell acquaintances, just because I'd rather be identified as a person who happens to have N+C, than a narcoleptic with cataplexy who happens to have a personality...if that makes sense :P

I wish you the best of luck telling people, though. It's not always easy, and they're not always accepting, but it's like any other part of who you are...if they don't like it, they're not worth fussing about anyway!

#4 munky

munky

    Member

  • Members
  • 213 posts
  • Gender:Female
  • Location:near Little Rock, Arkansas
  • Interests:Too many to list. It takes up too much space.

Posted 05 December 2012 - 12:47 AM

I wish you the best of luck telling people, though. It's not always easy, and they're not always accepting, but it's like any other part of who you are...if they don't like it, they're not worth fussing about anyway!


That's exactly how I feel about it! Well, honestly, how I feel about pretty much everything. If someone can't accept me for who I am, they aren't worth my time and attention.

I understand, though, that that approach can be difficult for other people. I've never had much need for social attachments, so while someone being an ignorant butthead might make me angry, it doesn't hurt my feelings. I just don't bother with them anymore.