Share Your Story
Community is about sharing, supporting each other, and having a voice. This is where
you can be heard in an open forum on topics that are important to you. You’ll find hope, insight, answers, and the awareness that if you are suffering from lupus, you are not alone. We invite you to share your own story and take part in the discussion.
Join in. We’re listening.
The information posted by individuals on www.couldihavelupus.gov represents personal experiences and is not meant to provide medical diagnosis or advice, or to take the place of health care or services you may need. Please see your primary health care provider about any personal health concerns. Please refer to our Disclaimer and Linking Policy regarding user-posted content and links.
The discussion forum is currently unavailable to post new discussions or comments. Please check back soon.
I have had Lupus for far longer than I have been diagnosed. Initially, I had assumed everyone struggled with fatigue and wondered how they did it. How did they go to work and social events and act like they weren't concerned about being too [more]Read more
Hello my name is Cynthia. I am 32 years old. I got diagnosed with Lupus seven years ago. It first started with arthritic like symptoms on my hands, there were days when I could not use my hand for nothing, the pain was to intense. Followed by [more]Read more
Today I am not feeling well again! I ache all over and feel like I have the Flu for the millionth time! My Husband Chris had to miss work again! I am so glad we signed up for the Family Medical Leave Act at his work or he would have probably been [more]Read more
"One day--in retrospect, the years of struggle will strike you as most beautiful." Sigmund FreudRead more
I was diagnosed with lupus in March/April of 2007. I had the positive ANA, I had all the other trappings thrown in just to make me miserable. It all started on this last flare with my middle finger of my left hand. It was the one I used to click [more]Read more
I'll start out by giving you a brief stint on my diagnosis with lupus, 18 years ago. I was always very active, never one to sit still or sit around. I was in the 9th grade and just became very fatigued. I'd come home from school and go straight [more]Read more
I am 40 years and have been Living with Lupus for 25 years. I am one of the lucky ones, I have a mild case of Lupus. I have been fortunate in that up until now -- I've only had one flare-up of the disease. My experience as a Lupus patient is [more]Read more
IN 1999 I raced my 1998 Mustang Convertible in the Fun Ford Events and NMRA (National Mustang Racers Association) and travelled the race circuit all over the world. It was a very exciting time of my life and i used to have a race partner and also [more]Read more
Today I am able to put tennis shoes and socks on for the first time in 5 months!!!! A majot milestone. My foot is not comepletely healed, but it's healing at a faster rate each day as the predisone eeks out of my system!!!! Thank God. Now I have [more]Read more
I slept late and was woke up by a very hungry boy. I love it when Steven wakes me up , he put his face so close to mine he's almost touching. Then he says "MOMMY ARE YOU AWAKE!" I tell him to give me a few minutes and then, I can hear [more]Read more
As a woman with Lupus, I realize everyday that I am lucky. Lucky in that I have married a man whose company has a good health insurance plan, lucky that I have a mild case of Lupus, one that allows me to live a daily life of certain limitations [more]Read more
I'm so surprised that I feel so good the day after a big night out. I have 25 people coming for dinner on Thursday I must start now in little steps to accomplish every thing I need too. I must also fight the temptation to do it all at once. I [more]Read more
I had always defined myself by my accomplishment, by my intellect and then I had what I call "brain freezes".Read more
Today I had work done on my bathroom, thing is, I feel like crap and the paint smell and the noise are driving me crazy. I'm not usually like this.Read more
It all started very slowly and before I knew it my life had significantly changed. I have days like most people with chronic illness that I feel on the outside looking in on life.Read more
Another Sunday night and for most people I know, now is the time when they begin to plan the week ahead but me, I'm still attempting to get caught up with the remnanats of last week. You see, last week I started a new medication and being a Lupus [more]Read more
Living with Lupus - I had such good intentions of writing in the journal daily - yet here I am after missing more days than I care to count... so back at it --Read more
Living with Lupus has taught me to monitor my own thoughts and actions, sometimes I get to the point where the stress level makes me want to scream, but I don't -- instead I realize that I am just doing what it takes to get through the day, each [more]Read more
Tomorrow begins three days, six hours each day of intravenous immunoglobulin. IVIG is taken from hundreds of blood donors. The blood is culled for the needed antibodies and it is cleaned, then infused back into me. It increases my immunity and [more]Read more