Includes Expert Content
Try to explain Lupus.
avatar
RifeDelight posted:
I've been dealing with this problem for awhile now, and I wondered if anyone else has the same. Whenever someone hears or finds out I have Lupus they start asking questions about Lupus and I give them the standard text book answer. Its seems though every time I have a cough or I grimace in pain it launches more questions. I don't really mind most the time, but sometimes people ask when I'm at a party or group event and I don't wanna be a Debbie downer (and other times it's just annoying to constantly have to explain things). For example I'm just about 21, so when at a party and I decline a beer (because my medication prohibits drinking) they ask why, since most people my age and my friends especially like to party and I used to but have become more....grandmotherly (like I don't stay out late, I don't go hiking as much, I don't party as much..ect). I feel I am constantly trying to keep a good balance of activity and rest and my friends are confused often as to why I don't do all the crazy things I used to and demand answers which launch Lupus questions.

How do you handle questions when you don't have the time or are not wanting to talk about Lupus? I'm thinking of getting a shirt that says "I have Lupus, Google it."
Reply
 
avatar
Lupylisa44 responded:
I love your t-shirt idea!!!

Every time I say I have lupus, the same thing happens. People have heard of it but always ask what it is. I have a few different answers I use depending on who is asking the question.

1. You know when you get a cold or a bug how the antibodies go after the bad stuff? Well, my antibodies misread good cells for bad and attack the good stuff.

2. In very simple terms, It's an overactive immune system. My body cant tell the good stuff from the bad

3. Lupus is an autoimmune disease where your body attacks itself. This can lead to many complications. It can affect connective tissue and threaten any organ in the body. It is chronic and there is no cure for it.

I hope these simple explanations help you tell people about your condition.

On a side note: I was 19 and in college when I was diagnosed. I had to drop out for a while and when I came back everyone expected me to be the party girl I was before I left. Nobody could understand what was happening. Back then (in the dark ages), there was no internet and all the medical books said lupus was a fatal disease! I would go to the bars with my friends and order a Shirley Temple to make it look like I was drinking with them and to avoid the hassle of explaining. Eventually, I started feeling better and went into remission. Very soon after, I was back to my old party girl ways with no ill effects. The remission lasted for 13 years.

I am not, however, suggesting that you do the same! It is very important for you to take care of yourself. Over time, you will eventually get to know your body and its limits. In the meantime, keep doing what you are doing.

Lupylisa
 
avatar
Patientofmanydiagnosis responded:
You will get to know who your real friends are when you see who is still hanging around or giving you a call when your not up to your usual par. Some of the ways I explain it is either saying :

It feels like walking around with the flu all the time. Except your not contagious yet your extra vulnerable to everyone else.

Or since people seem to have a better idea what HIV/AIDS is I say it's similar. Instead of not producing the right anti-bodies & having a weak immune system, our bodies over attack the good & bad (like Lisa said) This also causes the inflammation & pain of over produced cells in the same area. It's just we are not contagious. It can effect our organs & such just as bad & just as hidden as AIDS. That's why you may look good but not feel good that day.

That leads me to, if you haven't already heard of it, The Spoon Theory by Christine Miserandino on a web site called www.butyoudontlooksick.com She wrote out how she explains it & dealing with Lupus to her friend.

As far as being in the night life. Besides saying the alcohols not good with my condition or treatment in a joking kinda way I would say with all the meds. I'm on & especially when I would get partial seizures & such I already get my own type of high I don't need anything else. Or My high is just being out & not locked up at home sick. I don't need extra supplements.

I give you brownie points for balancing things & still trying to mingle with your friends even if it's just a fraction of the time before. Hope this helps.

Staying Strong,

Ezra
 
avatar
Lupylisa44 responded:
I totally agree about figuring out who your real friends are! After I became very ill and left school, all the girls I lived with (who I thought were my friends) ith only called me once to tell me how much I owed on the phone bill-then they charged me for that call!!! Needless to say I broomed them!

I look at it as a very good life lesson! Luckily, I was able to figure it out and realize that it was actually a very good thing!!!

The people who did stick by me are still my very best friends today!
 
avatar
LilPrego216 responded:
I just got a huge chuckle out of your t-shirt idea!! I'm thinking I may have to do that!! lol

I'm 23 and was dx'ed at 19, so I understand where you're coming from. I usually just explain it in easy terms. It's a disease that attacks your body from the inside out and all organs and joints are fair game.

I've found it's very hard to get people to understand what it is because it really is a hard disease to describe. When you don't look sick, how do you make someone believe that you are?

I really just try to explain it as I said above and then field questions when they come to me. I find it easier to talk to people who have some medical background or at least understand it to an extent, than people who have no idea what any medical term means.

LP
 
avatar
Yvelisse79 responded:
I am still adjusting to the idea of having Lupus. I am older (41) and have alot of friends, but I have chosen who to tell and who not to tell. The idea is simple, not everyone understands. I also dt feel like explaing it all the time. I have become very short tempered -not sure why. I also dont want everyone one to know for different reasons, they might feel pity for me, or treat me differently. I even hate saying the word Lupus. Even some of my close friends still dont know. I get teary sometimes when I tell people and I dont want to seem weak or scared. Does this make any sense?
 
avatar
Christine Miserandino replied to Patientofmanydiagnosis's response:
wow. I saw that this was posted a year ago, with the link to the spoon theory. I am honored that you guys shared the link, and humbled that it has become a resource. I am so happy that things have come full circle and now I am here posting to the lupus community. <3
- Christine Miserandino
 
avatar
cdestes replied to Christine Miserandino's response:
OMG! i LOVED this! it is so very true that i started crying, because people and family and most Drs. DON'T understand exactly how it feels to have this disease! just how DIFFICULT it is to do everyday things and to have the ENERGY and POSITIVE attitude it takes. I have had this for 28 yrs. but was FINALLY diagnosed only 2 yrs. ago, and Drs. still dont understand
 
avatar
suze529 replied to Yvelisse79's response:
I understand exactly how you feel..I went through that for about 8 years after I first found out. I came to realize though that you waste much to much energy on deciding who to tell, who not tell, wonder what this person or that person will think, if people are feeling sorry for you and all the drama and energy that goes with all of that. It is easier to just concentrate on your well being and live one day at a time. Eventually everyone is going to know...and although everyone will deal with it their own way, you dont have to...you just have to concentrate on you. Trust me....it works...the people who love you and care about you may feel sorry for you at first, but when they see that you can keep a positive attitutude, that goes away and life does go on.....really!!
 
avatar
anowlin responded:
There's a really good video, 2 minutes at most, which explains lupus in everyday terms and might put a halt to it. It's called "What is Lupus-Lupus Symptoms"

This does not go into the scientific detail that turns people off, yet it comprehensively explains the basics and symtpoms.

I use it a lot on my blog and in a newsletter that I write. No, you can't carry a video around most times. But you can send an e-mail link from you tube. Annie