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View Full Version : How did you tell your family + friends about your illness?



Elo
07-08-2011, 07:01 PM
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!

tgal
07-08-2011, 07:24 PM
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" (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/) 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

ruziska
07-08-2011, 08:11 PM
How did I "come out"? Like this: "I have Lupus"

Gizmo
07-08-2011, 09:09 PM
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

ritzbit
07-08-2011, 09:16 PM
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.

sharpiessave
07-08-2011, 09:19 PM
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.

Elo
07-08-2011, 10:11 PM
How did I "come out"? Like this: "I have Lupus"

LOL.

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

Elo
07-08-2011, 10:16 PM
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!

red246
07-09-2011, 06:07 AM
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!

rob
07-09-2011, 09:35 AM
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

Manderson
07-09-2011, 10:30 AM
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!

rob
07-09-2011, 10:43 AM
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

tgal
07-09-2011, 12:03 PM
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

rob
07-09-2011, 12:26 PM
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

lovedbyHim
07-09-2011, 12:55 PM
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).

luv1only63
07-09-2011, 07:33 PM
"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.

Elo
07-11-2011, 12:22 PM
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. http://a7.sphotos.ak.fbcdn.net/hphotos-ak-snc6/269722_2221981473474_1365819885_2616692_375033_n.j pg

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?

panda_lupo
07-11-2011, 03:20 PM
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

Peridot20_Gem
07-11-2011, 04:34 PM
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.

steve.b
07-11-2011, 07:50 PM
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.

Peridot20_Gem
07-12-2011, 04:51 AM
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.Steve,

I agree with you i've never joined and been asked alot but the member's off the staffysite i'm with the arguments they've had with other's besides hearing it otherwise, well it's a no thank you from me.

It's everyone to their own plus their own enjoyment of reaching to people and friends.

running girl
07-12-2011, 09:37 AM
I recently told my brother and got "well at least you get a Sienfeld routine out of it". Then I told my boss, who said, "oh that's nothing, I know a woman who has that and she's perfectly fine. You're lucky it was nothing serious". So, I'm reluctant to tell others.

My hubby, kids and dad are supportive. That's all I need, I guess.

rob
07-12-2011, 10:42 AM
Christ the brains of some people are hard to understand.

It's hard to understand something that in some cases, does not exist!

Peridot20_Gem
07-12-2011, 01:29 PM
It's hard to understand something that in some cases, does not exist!Well Rob you've nailed it on the head mate how the condition looks to outsiders.