what do you say?

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

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

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.

Hugs
Melissa

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

*ROTFLOL* Okie, that's hilarious. What a great way to end my day, laughing. Thanks!

-Ellie

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!