Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Katelyn 06/26/2017

Hi everyone! My name is Katelyn, I am 17 years old, and I was diagnosed with Lupus in April. So far, it has kind of sucked missing school and what not but it definitely could be worse. My main concern as of now is how I look. I understand how superficial that sounds but I look in the mirror and almost don't recognize myself. I have stretch marks all over my body and I felt I just looked terrible on both my prom and graduation. I understand it's from the pretiznone but I just want my face to be normal sized again! How long did it take for other people's bodies to start to look normal again? Does anyone else have the same issues as me here? Because of this, I feel I lack so much energy and don't want to do the things I use to enjoy so much. People tell me I am my harshest critic but it's so hard to watch everyone else around me having so much fun this summer while I'm trying not to explode out of my clothes. I started the steroids at 60 mg and I am now down to 35 mg but there is absolutely no changes positively in my body. Literally any help would be amazing :)

mrsrodriguez1201 06/27/2017

Hello, I personally have not been on prednisone yet, I'm in the process of finding a new rheum. I have gained so much weight due to all my illnesses holding me back from living life, exercising. You ARE your own worst critic, theyre right. I have gained 40 lbs and I have a gym membership but I get tired brushing my hair. I have SLE, Fibromyalgia, Peripheral Neuropathy, Connective tissue disorder and arthritis. Dont beat yourself up, just take advantage of the times when you DO feel good. Go out and enjoy life, a little thicker or not.

NewBeginnings90 07/04/2017

Hi, Katelyn. My name is Jay. I was also diagnosed with Lupus at the age of 17, when I was a senior in high school and I went through the exact same things that you are going through. I missed so many days of school when I was first diagnosed until I had to be home schooled. I started out on 80 mgs of prednisone and it was like my whole life went into shambles. I had all types of weird cravings for food that I never thought I could have, I gained so much weight, I got those same hideous stretch marks all over my body and my skin to me started to just look like plastic, and worst of all my face got so big and it was soooo much worst for me because I already had big cheeks. I couldn't stand to look at myself in the mirror and some days I still face that same challenge. I didn't know who I was anymore, I didn't go to my own senior prom, and I didn't even want to attend my own graduation because I always felt like everyone was just staring and judging me and I never felt comfortable again in my own skin, I lost many friends because they didn't understand what I was going through and all I had left to depend on was my family and still do. Now I am 26 yrs. Old and still face some of the same challenges and my biggest issue is with my body image as well and how I still don't like what prednisone has turned my body into.

ellycrys 07/20/2017

Dont beat yourself up - if we look good, we feel happier. That's when all my hair was falling out i cut it punky short and started dyeing it fun colours. I felt happier and looked better and got awesome compliments:) I used to call my hair appts therapy - because they were.

GOLDHEART 09/06/2017

MAKE UP TO USE.

CAN YOU BUY THIN LIZZIE MAKE UP ?
THERE ARE A LOT OF CONCEALERS NOW ON THE MARKET.
BE BRAVE, HAVE NO MAKE UP ON AND GO TO SEVERAL MAKE UP COUNTERS AND ASK.
I HAVE A MEDICAL ILLNESS THAT MAKES MY FACE RED, DO YOU HAVE ANY PRODUCTS THAT I CAN TRY ?
YOU MAY HAVE TO GO TO MANY, IF SO, KEEP BEING BRAVE TILL YOU FIND SOME THINK YOU LIKE.
ASK FOR SAMPLES.
ALSO MAKEUP USED FOR THEATRE MAY BE GOOD FOR YOU TO TRY.
TRY BLENDING A FEW MAKEUPS TOGETHER.
A SETTING POWDER IS A HELP, ESPECIALLY IF YOU BURN UP AND SWEAT.
KEEP SEARCHING GIRLS, AND I HOPE THAT YOU WILL BE ABLE TO GET OFF YOUR MEDICATION AND A CURE WILL BE FOUND

spikesbnl 09/10/2017

Hey Katelyn-- great name. I was diagnosed when I was 14, and was on loads of prednisose.. ugh i know what it feels like when you're in high school and you have stretch marks ( i have them on my biceps, chest, stomach, thighs.. everywhere) , your face is super round, and you eat, but not wanting to. I was on 80+ mg for 8 years. And then for another 7 more years on it. Personally I know we need to stay positive, but I only tell the truth if it's neg/ pos. It really doesn't get better unless you're off the prednisone. I am now 32, and I lose weight, gain weight all the time. I became a vegetarian in 2012 and a low sodium diet. I have found that has helped a lot with the hormones in our body and also the ones that are used in animal products. Also walking and swimming has helped decrease my weight. This way my joints don't get as much of the pressure of my weight. It's not superficial. I care so much about what I look like. I'm Asian and there's a different stereotype for us and what we look like. Anyway hope this helped.

Warrior92 09/26/2017

I can feel your pain. I came out the hospital not recognizing myself in the mirror and none of my clothes fitting. It broke me. I was only a kid at 9 but I prided myself on my fitness and psychologically it broke me. It took a couple years for the weight to drop off and longer for mental recovery. Now I don't mind my old stretch marks. But I know at a young age it's tough. Hang in there love.

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