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Helping Family Understand Your Pain
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Andie_WebMD_Staff posted:
One of the hardest things for Lupus patients have to do is to help their families understand the pain they are feeling . You may look good on the outside, but inside your body is screaming.

"You may not know what to expect because symptoms can be nonexistent one day and hit full force the next -- leaving you guessing as to when you'll feel your best. But there are a few things that you can tell your family to count on, like fatigue and flare-ups."

This story includes how one mother explained her RA pain to her 10 year old daughter. If a 10 yr old can understand RA pain, hopefully Lupus pain can can also be understood by child and adult, alike.

How do you help family or friends understand what you're going through?
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Lupylisa44 responded:
I tell people to take their bottom lip and pull it over the top of their head!!!! That is what my pain feels like!!!

Lupylisa

(ok, so I stole that one from Bill Cosby)
With love, with patience and with faith, we'll make our way.
 
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mitchyboy replied to Lupylisa44's response:
My fiancee has been fighting lupus symtoms for about a year now and was only diagnosed about 6 months ago. During the worst of her flare up, there was no real way to tell how bad she was feeling. She really looked ok but on most days she was lucky to be able to get out of bed and get into the shower. It hit her really hard. I couldnt get a real feel for it untill we got the resluts of a musle biopsy that they had taking from her leg. it showed that her musles were litterally shriveling up and dying!! I cant really imagine how bad that would feel, but it has to be worse than anything I have ever experienced. She has got to be the strongest person that I know to have gone through all that she did.
 
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Andie_WebMD_Staff replied to mitchyboy's response:
Hi Mitchyboy,

Thanks for sharing what it was like for you on the other side of the pain. It is quite shocking to hear you describe how the muscle looked as though it was shriveling up and dying!

Sometimes it's so hard to know when others are feeling, but a visual like that really is humbling, isn't it?

I think we get used to remembering what it was like before our loved ones got sick. When they still seem okay on the outside we tend to forget they're suffering until we see how hard it is for them to do the normal things they've always done before.

Since I'm sure she's as beautiful as any other day, how can you tell when your fiancee is really suffering more one day than another?
 
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Lupylisa44 responded:
But seriously...It is very difficult to explain the pain you are feeling to someone else. Pain is subjective. For one person a pain can feel like the world is ending and for another, that same pain is not so bad.

For example. I was living with two ruptured disks in my neck for a couple of years before I actually had surgery. My friend ruptured the same disks and had to have surgery within two days of the injury because, to her, the pain was completely intolerable.

I like to use humor to explain my pain. So when I joke about pulling your lip over your head, it creates a very vivid image and enables a person to imagine the pain it would cause to do so.

If someone you love is in pain, there are subtle clues to look for. People close to me can usually tell when I am hurting even when I "look good." They tell me that I lose the sparkle in my eyes. When the sparkle is gone, they know to stay away from me!!! Because when someone is in pain, their sense of humor and patience are usually the first to go.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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ReneeC12 responded:
This is how I explain my pain and having Lupus!!!

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

It has helped the people in my life understand Lupus a little better!
 
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Christine Miserandino responded:
Keeping those lines of communication open are very important. Be honest. Describe how you are feeling in words, expressions and examples they will understand. Of course keep things age appropriate for younger ones. Keep in mind while you are here on webmd learning about lupus and more. Your family needs education too.

-Christine
- Christine Miserandino
 
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Christine Miserandino replied to ReneeC12's response:
HI Renee,
I just saw that you posted The Spoon Theory. I am so honored that you included it here! and yes, there are many of us "spoonies" out there that have used this example to explain lupus and other chronic illnesses as well. :)
- Christine Miserandino


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