what do you say?

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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/24/2010 7:07 PM (GMT -7)   
Hey everyone:)

I've just had a lot of people today ask what lupus is, and how it affects me. I know a LOT about my personal experience, and some about the disease itself as labelled by the docs..just wondering what everyone says to their new friends when they ask what lupus is? How do you answer such a complicated question honestly, without being totally simplistic and just saying it's an autoimmune disease.

-Ellie27
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/24/2010 7:29 PM (GMT -7)   
I tell them, "My immune system has gone insane and randomly attacks perfectly normal parts of my body as though they are foreign substances. Like today it might decide my fingers are invaders and the joints/muscles end up red, hot, swollen, inflamed, etc."

Then, if appropriate, I tell them my 3 biggest symptoms (for me, overwhelming fatgiue, cognitive dysfunction, random joint/muscle pain/inflammation).

And maybe mention a handful of the other common ways it affects people - such as kidney illness, Sjogren's syndrome, or whatever is on my mind at the moment. (Often whatever you guys have mentioned most currently.)

Hope that helps,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/25/2010 8:07 AM (GMT -7)   
I have found the easiest way to answer for people who have no idea what Lupus is, is that my immune system has become allergic to itself, that it can start to attack what ever it thinks has become a foriegn substance like a virus. Then if I wear a shirt or anything that has Lupus on it (from a lupus walk) then I will carry around a printed piece of paper that says this from the Lupus foundation of America

" lupus, one of the nation's least recognized major diseases, is a chronic and potentially fatal autoimmune disorder that affects more than 1.5 million Americans, primarily women in their childbearing years. In lupus, the body's immune system forms antibodies that can attack virtually any healthy organ or tissue, from the kidneys to the brain, heart, lungs, skin, joints and blood. No new treatments for lupus have been approved in over 50 years and many currently used treatments are as toxic as the disease itself. Lupus is a leading cause of premature cardiovascular disease, kidney disease and stroke among young women. "

People genearlly will read that and then they immediatly ask how it has effected you and then you can share your story if you would like! Sometimes if they get very persistant and I am not feeling well or I am tired I will tell them to google the spoon theory.

I don't konw if it is the way I do it but I no longer get people telling me but you don't look sick or you are too young go be sick! Or any annyong comments like those

Wolf92
New Member


Date Joined Jul 2010
Total Posts : 9
   Posted 7/25/2010 7:04 PM (GMT -7)   
I usually let them know my body fights itself & if they seem interested or ask more I tell if not they got goggle lol jk 

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 7/27/2010 4:46 AM (GMT -7)   
Often people who inquire about "lupus" have never heard of it and unfortunately because many times they cannot see our illness they do not consider it "real" if you will. This makes providing an explaination hard. That said I keep it short and sweet "lupus is a disease in which my immune system is fighting healthy cells. The affects for me personally are internal, meaning my organs and tissue are being compromised."

Amy mentions the "spoon theory", if you haven't read it yet it's a great story written by a fellow lupie explaining to a non-lupie what a day in the life of a person for lupus is in laymans terms. Once I discovered the "spoon theory" I printed out or emailed a copy to my closest friends and relatives to help them relate.

www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Hugs
Melissa

<Activated link>

Post Edited By Moderator (Lynnwood) : 7/27/2010 9:07:56 AM (GMT-6)


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 7/27/2010 11:33 PM (GMT -7)   
For me I just tell them the samethings you do.
 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/30/2010 5:40 PM (GMT -7)   
Thank-you Lynnwood, Amy, Frank, Melissa, and Wolf for taking the time to let me know how you share with people about your illness. I appreciated the varied responses. I just get stumped sometimes. Especially when people/my new friends don't have a CLUE what lupus is, and even are quite shocked to find out how sick it can make a person. And then yah, as a few responses alluded to, people just don't see me as "sick". It's a very hidden disease at times that only we feel and show not a lot of outer tangible symptoms for others. In fact I tend to keep a lot of the struggles to myself. For example, I don't need to advertise to everyone close in "my world" that I'm starting to lose hair on my head. I just wear a hat *L* I have read the spoon theory, but have yet to give it out to someone. I think it's a great description of the inner thought life I always have around what I will tackle in a day (or can). I have tried to explain to a couple close friends just why I can't always join them for everything, and just how badly I want to, but know that I will suffer so. Sometimes I tell them that I'm coming, suffering or not, but explain how I'm feeling and that I will have limited abilities with energy and such, but just love the company..

Lynnwood, I have to say I liked your wording about "My immune system has gone insane and randomly attacks perfectly normal parts of my body as though they are foreign substances. Like today it might decide my fingers are invaders and the joints/muscles end up red, hot, swollen, inflamed, etc." It almost sounds humorous. Although I know very well that it's not.

Thank-you again everyone. You've broadened what I feel I can say to people, and maybe should. So many people that I've met have no clue, and I'm the first person they've met that has it.

It's a long weekend here in Canada, and to all of you out there who are having a long weekend too, have a good one! (even if it's not long, have a good one anyways:)

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/30/2010 6:51 PM (GMT -7)   
I just say my body hates me and everytime it tries to fix what's wrong it must have been the day it skipped mechanics class! It reminds me of a pack man. that little smilie guy that chews up everything but in my case it chews up everything that's infected and then it's still hungry and raids the rest of the cupboards and fridgerators until there isn't anything good left.
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol

nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta

Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis



Jesus is a friend of mine

We come into this world crying while all around us are smiling. May we so live that we go out of this world smiling while everybody around us is weeping.

Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/30/2010 11:22 PM (GMT -7)   
*ROTFLOL* Okie, that's hilarious. What a great way to end my day, laughing. Thanks!

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 7/31/2010 8:14 PM (GMT -7)   
i simply tell people its kinda like having an allergy . . . to yourself! kinda funny because now when my actually allergies are acting up, people will ask "what are you allergic to - besides yourself??" it at least puts it in a way that they can kind of understand and relate to . . .
Anne

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SLE, Sjogren's, Reynaud's, Peripheral Neuropathy

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 8/1/2010 6:35 PM (GMT -7)   
alienwife said...
i simply tell people its kinda like having an allergy . . . to yourself! kinda funny because now when my actually allergies are acting up, people will ask "what are you allergic to - besides yourself??" it at least puts it in a way that they can kind of understand and relate to . . .


This sounds exactly like how I handle it!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.
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