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Thread: How did you tell your family + friends about your illness?

  1. #11
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    Haven't been dx'ed yet, but I know my mother will go bat-shite crazy. She's been hyper-vigilant with the health of her loved ones ever since dad died from lung CA. She lives in Florida so we don't see each other on a regular basis. Also I look the same I guess. My H knows something is going on and what I suspect it is. My son will ask "are you going to die?" I will say "no, I am too mean." and he'll think "rats, no life insurance $$ after all." Seriously tho, it'll be in the presentation. For my mom I'll have to be upbeat about it. She has no internet access or computer skills so I know she won't be on the interwebz 24/7 making herself crazy with it. However, her sister in law who lives near her in FL DOES know how to use the internet and has access at home, so I'm sure the two of them will be scrolling through scary websites.

    Just depends on what rheumy finds and dx'es. RA, lupus, PA....whatever but I better come out of there with SOME dx!

  2. #12
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Manderson,

    I've had people ask me if I'm going to die before too. I just tell them that since I plan on living forever, the question is irrelevant.

    Rob

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Quote Originally Posted by rob View Post
    Seems like a different time, a different world. It's like everything in my life stopped, and I was kicked back to the starting point to start all over again from scratch.

    Rob
    Wow. What a great way to describe what Lupus did to me. I love how someone here can say just the right words at just the right time. Thank you

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by tgal View Post
    Wow. What a great way to describe what Lupus did to me. I love how someone here can say just the right words at just the right time. Thank you
    I'm a very different person now, as well. That idealistic young fellow, the life of the party, the fearless nothing will stop him person, is all but gone, and I'm what's left. I've known many people who have wished every day that they could just start over again with a clean slate. If only they could have a new beginning, and a second chance, that their life could be salvaged, and be made better.

    So, I try to look at being involuntarily sent back to the beginning to start over, and to have a second chance, as a blessing. An opportunity to better myself. To try to make the best of a bad twist of fate. Some days I succeed, and some I don't. I'm OK with that.

    Rob

  5. The Following 5 Users Say Thank You to rob For This Useful Post:

    Gizmo (07-09-2011), lovedbyHim (07-09-2011), Manderson (07-09-2011), steve.b (07-09-2011), tgal (07-09-2011)

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    Wow Rob you brought tears to my eyes on this one. I love ya more every day!

    When I found out I was so glad to finally have some diagnosis that my enthusiasm spilled over so of course my kids were happy to know I could be treated for it. My dad was sad of course and he cried. I told him, " Dad, you know me and you know as hard as life has been for me, it's been an awesome ride and I have lived it to the fullest right? Well I need to tell you, I now have a diagnosis for all the sickness. It's lupus." His reply was, "ohhh Tammy." Then I started telling sick jokes about all the deaths I might be spared from.

    Co-workers were glad I was finally going to get treatment. Those who made jokes about me for months walked in shame. It was a good day(grin).

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    "It's like everything in my life stopped, and I was kicked back to the starting point to start all over again from scratch."

    My sentiments exactly. could not have said it better if i tried.

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    Okay, this might seem goofy and whatnot..so I just wanted to know what all you thought of it.
    I'm thinking about telling everyone at once via facebook. I'm going to create an album titled "Dear World, I have an Autoimmune Disease. Sincerely, Me".
    And have an actual title page to the album - which I have here.

    Now here comes the goofy part... (besides the title page), and that's that i'm going to explain the basis of autoimmune diseases using a metaphor including ninja, samurai, and pirates.

    I figured it'd make it more interesting and possibly easier to understand. Then I was going to have a page or two where I kind of go over having an autoimmune disease. I got the idea from a post on the forum about understanding chronic pain, and also because i'm kind of whiny.
    So... saying, if I sleep 14 hours a day, it's not because i'm lazy, it's because i'm dealing with chronic fatigue.
    If I look happy, it means just that. That I'm happy...NOT that i'm healthy, "feeling better", or "getting better". I deal with being sick every day, and I'm learning to cope and be happy even though I'm sick.
    To try to have them understand that it's hard for me to make plans, and if I cancel at the last minute, it's not because I don't want to go, it's because I can't.
    And touching on some of the simple stuff, like "but you don't look sick..." and suggesting "cures", or "you know, i've heard that you shouldn't be ...."

    Anyways, I just wanted your brutally honest opinions on this. The whole ninja thing is probably a little too goofy and overboard, i just wanted a way to make it a little bit more lighthearted I suppose.

    I figured that this way, anyone who was interested enough or cared enough about me to read it, would. It would explain the basics of what it is, and what I need them to understand. Plus, this way I can be lazy!

    I also want to be kind of open about this. On the one hand, I don't want to let this define me, but on the other - it is now a big part of who I am, and there are just so many people - even in my circle of friends - who have absolutely no idea what an autoimmune disease is or what it's like. And I want to change that, even if it's only for the few people I talk to.

    Thoughts?

  9. #18
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    OH boy! When I told my mother I had lupus, she got angry and told me its in my head and hung up on me haha! We didnt talk for a whole month. Then I told my family who lives in the same city with me and My Aunty was sadden and then her daughter said "oh great you’re a bleeping werewolf! Get over yourself I have a back injury you’re not special." and then my brother was like soooo does that mean I get Mom's house.

    I also did tell one of my good guy friend and we were sitting in a Coffee shop and he jumped up and grabbed me and said at the top of his lungs with tears down his face “Thank GOD you’re not pregnant with that A**hole kid ha-ha I was like oh dear and everyone was just starting at us (awkward) haha And then my other friends I sent them the article called “Spoon Theory” and had good responses except for one friend who was upset.

    But all in all Family and good friends I did in person and friends I did via Facebook with a link haha

    AmandaPanda
    "We're all in the same game, just different levels. Dealing with the same hell, just different devils.

  10. #19
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    Well mine came out with my hubby which would happen anyway, then my one sister incase she wanted to get tested incase she'd inherited something, my neighbours know and if i go out on my scooter people who have seen me walk the canal with bruno have asked and i've told them Lupus and you just can't believe how ignorant people are but i never stop there ready to explain it, if they want to act dumb well that's up to them, there's enough medical books in librarys to find out.

    The best i had though was being took to my doctor's by Taxi and we know this driver well, he asked how i was explained it was the Lupus and abit about it and the next words out of his mouth was can you catch it SEXUALLY i said no you can't and dow worry as long as you ah with me.

    Christ the brains of some people are hard to understand.
    Last edited by Peridot20_Gem; 07-12-2011 at 01:27 PM.

  11. #20
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    elo,
    at first i thought "oh no"

    but i do not like facebook

    as i thought more about it.............

    it is probably a good idea.

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