Rena Baldwin was diagnosed with lupus in March of 1993 and has been living with the disease ever since. Some days are harder than others.
Like Baldwin, many lupus patients suffer from symptoms that include muscle soreness, aches, pains and skin damage. A number of patients also don’t express all of their symptoms to their doctors.
A survey conducted by Roper revealed that 52 percent of lupus patients downplay their symptoms when speaking with their doctor. Driven by these survey results, an online movement dedicated to encouraging patients to speak up has developed. Lupus Out Loud, launched this month to coincide with Lupus Awareness Month, is hoping to be the beginning of an open and honest dialogue between patients and doctors concerning their symptoms and dealing with the disease.
Susan Manzi, MD, MPH, co-director of the Lupus Center of Excellence, said, “Common lupus symptoms, including fatigue and pain, can be invisible to others, so many patients feel isolated and alone. Further, in an effort not to burden their family or physician, patients often underplay what they are actually experiencing.”
Baldwin agrees. “Sometimes with lupus you tend to get so many symptoms, you don’t want to burden. You tend to downplay all of it,” she said. However, Baldwin encourages patients to get out of that mindset and to not hide the symptoms. “I know with personal experience, it makes it harder for your doctor to treat.”
When it comes to lupus, Baldwin believes it is not only important to be candid with doctors, but with everyday people too. “A lot of times, the subject comes up and they’ve never heard of it or have and don’t understand. Lupus is misunderstood. People either think it’s nothing or that they should start planning your funeral,” she said.
Through the Lupus Out Loud website, patients and supporters of those with lupus can view and share videos. Even Baldwin shares her story in one of the featured videos. The website also encourages patients to take a pledge to make an appointment with their doctor before the month is over and to share everything that they are going through.
For more information, visit www.lupusoutloud.com.
