Community Views: Tips for Those Newly Diagnosed With Lupus
Last updated: October 2022
Receiving a lupus diagnosis often leads to a big question: “Now what?”
It is true that learning what life with lupus looks like can be an adjustment. Fortunately, we have a supportive community of people who have been living with lupus for a while and know what works for them. They know the challenges and many questions that those newly diagnosed often have.
We reached out to community members to get their suggestions for living a full life with this diagnosis. We asked followers of our Facebook page to tell us: “What words of advice would you give someone who is newly diagnosed?” Nearly 100 community members weighed in. Here is what was shared.
Several community members shared that the best way to learn more about lupus is to read up on the disease. Many said that books were much more helpful than online reading and research since online resources may be less factually accurate and might steer someone in the wrong direction.
“Read all that you can read.”
“Buy books on lupus, because very few doctors know much about it.”
“Buy ‘The Lupus Encyclopedia.’ It is a fantastic resource!”
Educate those in your circle
After receiving a diagnosis of lupus, many find that it helps when friends, family members, and coworkers also learn about the condition. Many people are going to ask questions anyway, and it helps to control the narrative and educate others about what you would like them to know about lupus. This can help them better understand you and your specific challenges.
“Educate your community.”
Listen to your body
This is a tough bit of advice to put into practice, but one of the most helpful and affirming things to learn. Lupus affects everyone differently, but even more than that, it affects each person differently day-to-day. It takes time to learn your own body’s cues as to when it needs rest. Having lupus means understanding that you cannot physically push yourself every day. Instead, most people find that they need more physical and mental rest than they did before getting diagnosed.
“Listen to your body.”
“Learn to listen to your body. At times, you can ‘push through.’ Your body will tell you when to not do it, and you need to rest. Listen to your body.”
“Listen to your body. It knows what you need.”
Be kind to yourself
Many in the community shared that their most powerful tool is learning to be kind to themselves. The world is going to be tough and demanding, so it helps to have your own back and give yourself permission to rest. Not everyone is going to understand how you live your life, and that is OK. Instead of mentally beating yourself up when you need a break, it is OK to be kind to yourself and just accept it. Being your own advocate and cheerleader will make the journey easier and more enjoyable.
“Appreciate the good days. And allow yourself to not always be a winning warrior.”
“Be patient with yourself.”
“Most important, go easy on yourself.”
“Do what you can for the day. There is always tomorrow.”
Keep living life to the fullest
Yes, lupus may change what your day-to-day life looks like, but that does not mean you cannot keep enjoying the life you love. You still have permission to live life to its fullest, with hobbies, vacations, an active social life, and so much more.
“Love your life!”
“Do not focus just on your disease.”
Thank you to everyone who shared their wisdom for this story. We are grateful to hear from so many community members who are willing to offer feedback to those who are at the beginning of their journey with lupus.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?