Community Views: What Does Living Well Beyond Lupus Mean?
Last updated: September 2021
It can take years to get an accurate lupus diagnosis. But what happens each day after that? For many people living with a rheumatic disease like lupus, finding ways to live well beyond the diagnosis is more than just a way to cope – it is the only way.
It is true that each person's perspective of what it means to live well beyond lupus varies. Developing new coping skills comes with time. Fortunately, this supportive community of warriors has come together to share all of the different ways people living with lupus can say, "Yes, I have lupus, but..."
We reached out to the Facebook community to get their suggestions for living a full life with this diagnosis. We asked followers of our Facebook page to tell us: "What does living well beyond lupus mean to you?" More than 60 community members weighed in. Here is what was shared.
Living 1 day at a time
"Taking it 1 day at a time. I am thankful for a loving and supportive family."
"That’s my goal to have 1 good day at a time. Some days it’s not possible, but that’s what I shoot for!"
"Some days I take it 1 hour at a time. I am alone, so lupus has always been a challenge."
"Living life to the FULLEST! Every day knowing you have done everything you can! And BEING happy and Loved by those AROUND you!"
Listening to my body
"I try to clean my house on my ok days, but my body starts slowing down then I need to take breaks and get up again. I tell myself your legs and arms aren't broken, so get up!"
"We just have to listen to our bodies and rest when it says to rest."
"Wake up. Assess the situation. Drink coffee – then you live life to the fullest, either in bed or not."
"It drives me nuts when I can only do 1 task before I need to rest. But I just do what I can and rest when my body says rest."
Changing my mindset
"I made a decision a long time ago when first diagnosed that the only way I was going to survive lupus was to not let it keep me down. I wake up every more morning thanking God for another day, and then get up and get going."
"I have not hiked, rode my mountain bike, in-line skated, or walked with my husband and dog for almost 2 years. I was thinking about what I can do. I can stand! Soooo...I bought an e-scooter. I can play again!! By the way, I am 57 years young."
"I allow myself a couple of days a month to be down in the dumps and wallow in what’s not going well. But beyond that, I try and stay positive."
"Embracing every single day that you've been blessed with. Through the rough day, the dark days, and the brightest days, make them all count."
"Trying to stay positive. My faith, my loving family, and my friends lift up my spirits. Like most of you have said, 'I take it day by day.' Always grateful for the good days."
"Waking up each morning with a grateful and thankful heart. Whatever state you are in be content."
"Feeling blessed every morning I wake up. I have learned to accept what I can do each day and not worry about what hasn’t been done."
Join the discussion
What does living well beyond lupus mean to you? What advice would you give a friend living with lupus? Would you offer any tips? How would you support them?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?