Survey: 8 in 10 Wish They Could Have Managed Lupus Differently

We all have those moments where we look back and wish we could change something from a particular moment in time. People living with lupus who took our 2nd Lupus In America survey have this thought often. In fact, 8 out of 10 people who took our survey wish they had changed their doctor sooner for diagnosis or managing their lupus.

The survey included responses from 836 people living with lupus, of which 592 people are older than age 50.

Next, we wanted to support these findings so we asked the Lupus.net Facebook community, "Looking back, does anyone wish they had changed their healthcare provider sooner? If so, why?" Here is what you shared:

My old doctors did not listen to me

"Yes. He was prescribing me everything under the sun. His words."

"Definitely, because being young at the time I didn’t know what to expect the rheumatologist to do. He would ask a few questions and off I go. He did the bare minimum. Never went over lab work to make sure I had an understanding of the numbers. He was awful and so was the staff. But oh have times changed. I taught myself to read labs and question any numbers on my lab that have (H) high or (L) low."

I still struggle with healthcare providers and lupus

"Yes! I have one right now that only treats me for fibromyalgia! She refuses to acknowledge that I have lupus even though her own professor who was a rheumatologist and specializes in lupus diagnosed me! He retired so I went to her. I’m giving her 1 last try this week so we’ll see how that goes!"

"After several different doctors over 10 years, I have learned that we are just a number, not a patient. Most doctors really could care less. It took over 10 years to get a diagnosis."

"It's a daily struggle. The meds and the side effects have been horrible. My body doesn't seem to do well with anything they try."

Things are looking up

"I have been very fortunate with my doctors...At different stages, they all stepped up and *gave me my life back* so to speak."

"I called my search for answers a journey. Doctor after doctor with no answers. I would eventually give up and restart the answers journey all over again. That pattern went on for a long, long time. Finally, yet another new doctor who knew if newer labs would finally find my lupus. It can definitely take many doctors over long periods of time."

We hope learning how others feel validates your frustrations with your lupus diagnosis and treatment journey. We are so grateful for your insight and advocacy in this space. It creates awareness for others who are new to lupus or supporting a loved one with the condition.

The Lupus In America 2021 Survey was conducted online from February through March of 2021. Of the 836 people who completed the survey, 592 were 50 years or older, 95 percent were women, and 5 percent were men.