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

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    Default How did you tell your family + friends about your illness?

    Hi again, lot of posts today lol. I was just wondering about everyones "coming out" stories.

    Very few people know that I'm even sick, let alone that I have an Autoimmune disease, and i'm not really sure how to tell them, to be truthful.
    So far, my mother and my boyfriend both know - they were both there going through the whole thing with me.
    I told my brother, and not really anyone else.
    My boyfriends parents know, because he told them, and his mom is one crazy gossipist, so who knows who else knows about it now..hehe.

    I just really don't know who to tell or how to tell them. I have friends that I speak to and hang out with, but we're not super close, and I'm at a loss of what to do. On the one hand, if something like this happened to them, I would want to know, but I'm not sure if they do.
    Besides, how would that conversation go?

    "Hey, so, I know this is completely off the subject, and has nothing to do with what you were saying, but uh, I have an autoimmune disease".
    *crickets*
    Awkward.

    Plus, the inevitable, "what does that mean?" is really hard to answer and makes me feel like i'm complaining.

    But anyways- just wondering what you thought or what your advice was -and how your stories go, so maybe I could get some ideas of what to do.
    Thanks!

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    So few people understand what Lupus is that often time family even give you the deer in the headlights look. I used "The Spoon Theory" with my family and friends but some still don't get it. Because there are so many times we look OK it is hard for people to understand how sick we are. It isn't really their fault. If we had cancer our body would show it but, with this disease, most of the damage is internal.

    Some people just "get it" and some people don't. Tell those close to you and never be ashamed to say what you have if someone asks why you were at the doctor or something. Who we tell really depends on each of us. Because I had a major seizure at my office there was no way to keep quiet about mine LOL

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    How did I "come out"? Like this: "I have Lupus"
    "I'm going to get healthy or die trying"

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    I started with family, and eventually told close co-workers. I had been having trouble walking for a while, so it wasn't like people didn't know something was wrong. But, I also worked in a school where the building culture was to be supportive. My in-laws occasionally still act totally surprised when I mention my lupus - like they forgot I had it LOL

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    I dont even know if it was me or my mom who told most of my family. I felt really uncomfortable telling my friends at first, for the same reason. I didnt know how to answer the "whats that" question I knew they would ask. I had to start wearing hats and gloves to school everyday, which is against the dress code for everyone else, so I got weird looks, and had to learn quick how to explain it. Oddly more to the teachers than students because they were yelling at me to take my hats off. How many people buy the excuse "I have a doctors note for my hat"? I started carrying a copy with me. I just tell people the simplest explaination unless they dig deeper; lupus is an autoimmune disease where my immune system attacks healthy parts of my body and makes me sick. That is pretty much exactly what I say every time.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    When my brother came out the traditional way, my response disappointed him. I said, "Well, yeah, of course you're gay." That's pretty much how my coming out story went too, only it was all disjointed and confusing, and lasted a few months. For the longest time everyone knew there was something wrong with me, but no one knew what. Then folks started thinking that maybe there wasn't really something the matter, and that it was all in my head. So after my 2nd Rheumy visit, after I was officially diagnosed with an unspecified connective tissue disease, I practically shouted it from my rooftop. Then the diagnoses started piling up: Sjogren's, RA, Lupus, Mixed connective tissue disease. It all got to be a mouth full, so for family and friends, it's referred to as "The Mess". (please note the capital letters.) For everyone else, work people, the network of people in this small town who ask me how I'm feeling every day, it's referred to as Lupus. They've barely even heard of Lupus; and I don't have the time or energy anymore to educate random people about AI issues. Lots of people at work have told me they googled it after they found out.

    What seems crazy to me is that once I got diagnosed, people were relieved. Not in that "now you know, you can fight it" way. But in that "Oh, it was lupus. Now you know and you're all better" way. These must be the people who lied about googling lupus, or they'd know better than to tell me I look sooooo much better, healthier, when all I've done is decided to ignore the Sjogren's and wear eye makeup that day.

    Anyway, I'm sure you'll find ways of telling people that suit you. It could range from the sit down, long conversation you have with a friend, or it could be like when my Chief walked into Dispatch and grumbled about it being "an icebox up in here" and I said "Well, tough, sir. I have lupus." I kinda got a kick out of seeing his big face go red from embarassment instead of loss of breath due to barking orders.

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    Quote Originally Posted by ruziska View Post
    How did I "come out"? Like this: "I have Lupus"
    LOL.

    Well... I *guess* that *might* work.
    (;

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    What seems crazy to me is that once I got diagnosed, people were relieved. Not in that "now you know, you can fight it" way. But in that "Oh, it was lupus. Now you know and you're all better" way. These must be the people who lied about googling lupus, or they'd know better than to tell me I look sooooo much better, healthier, when all I've done is decided to ignore the Sjogren's and wear eye makeup that day.
    You know, I dealt with that a bit too! When I first told my mother that I had a nonspecific AI disease (Same as you (: Still have yet to see a rheumy to get properly diagnosed), she was... excited. Granted, that had a lot to do with the fact that we had been battling for months with different doctors to see what was going on - even i was excited at first. But after the first day of bliss I crashed- LOL. She didn't though - still stayed hyper positive and excited that I finally knew what was wrong! My boyfriends mother is pretty ignorant like that as well. "Well..doesn't she want to see a specialist or something to get fixed?" *facepalm* Yeah, right. Like there's actually a cure or some magic pill to take to make it all go away.

    btw- your story about your Chief cracked me up! Good for you!

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    I don't remember specifically how I have brought it up w/people that don't already know. I have used the Spoon Theory to help some people understand. Others that have thought that it was like AIDS, I have explained that it is completely the opposite and the immune system is in massive overdrive and attacking EVERYTHIING in me, good & bad alike. That seemed to help some. And then there are others who no matter what you tell them wouldn't get it!
    Lauren

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    Well, I got ahold of my Dad, and told him yes, I have Lupus too, deal with it. (my mother also has Lupus)
    He and I weren't getting along very well back then, so I was a bit short with him. That evening, when she got home from work, I told my fiancee, and that didn't go well.

    A month or so down the road, when it was clear that I would no longer be able to work, I called all of my employees in on a Saturday for a meeting. I just laid it out as plainly as I could. That was hard, because all of my employees were people I'd worked with for many years at various other businesses, and I considered a great deal of them, good friends. There were some tears, and many hugs.

    That was almost 8 years ago now. 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

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