WXYZ-TV — With lupus, a day that may look unproductive to someone else can be the same day a person is giving everything they have.
A person may be exhausted, in pain, struggling to concentrate or searching for the right words while still trying to manage work, family and everyday responsibilities.
That disconnect between effort and appearance was at the heart of Saturday’s Metro Detroit Walk for Lupus, where about 200 patients, loved ones and supporters gathered at Rochester Municipal Park.
The annual event, organized by the Michigan Lupus Foundation, raises awareness and money to support people living with lupus across the state.
“Events like the Metro Detroit Walk for Lupus remind people living with lupus that they are not alone,” said Kimberly Dimond, executive director of the Michigan Lupus Foundation. “I’ve been diagnosed with lupus for over 20 years and it can be incredibly isolating. As primarily an invisible disease, bringing hundreds of patients, families and supporters together to make lupus visible is incredibly powerful.”
Lupus does not affect everyone the same way — and it does not always affect the same person the same way from one day to the next.
Symptoms can include extreme fatigue, pain, joint problems and rashes, along with cognitive difficulties — sometimes knowing exactly what you want to say but struggling to find the words.
Lupus disproportionately affects women, particularly during the childbearing years, but men and children can also develop the disease, according to the Michigan Lupus Foundation.
Symptoms can flare and recede. A relatively good day can be followed by one when ordinary responsibilities suddenly require far more effort.
And often, there is no obvious outward sign of how much effort that day requires.
The Lupus Foundation of America says 55% of people with lupus report they can no longer work full time because of complications from the disease.
For some patients, managing lupus can mean reducing hours, modifying a work schedule, working from home or stepping away from the workforce altogether.
And simply pushing through is not always harmless.
Stress is not only an emotional burden for someone living with lupus. It can also be a physical trigger.
The Lupus Foundation of America says emotional and physical stress can trigger a lupus flare or worsen symptoms.
That can create a difficult balancing act — keeping up with work, family obligations and everyday life while also recognizing when the body needs rest.
Even getting the right care can become part of the battle.
Rheumatologists are the specialists who diagnose and treat lupus and other rheumatic diseases, but the American College of Rheumatology projects the U.S. could need roughly 4,700 additional adult rheumatologists by 2030 to meet patient demand.
For someone seeking answers, that can mean searching for the right specialist while navigating appointments, testing, medications and medical expenses — often while still trying to understand what a lupus diagnosis means for their own life.
Then there is the challenge that does not show up on a medical chart: figuring out how to talk about it.
Someone diagnosed with lupus may find themselves explaining the disease to family, friends and coworkers while they are still learning how it affects their own body.
Limited awareness can also create uncertainty for people who genuinely want to help. Loved ones and coworkers may not know what questions to ask, when to offer a hand or whether stepping in could make someone feel singled out.
Sometimes the hardest question is not “Do you need help?” but knowing when to ask it.
At the same time, someone living with lupus may need support while also worrying about becoming a burden.
That can leave both sides trying to navigate an illness that is unpredictable and not always visible — and one where even the people closest to a patient may not know whether it is a relatively good day or an especially difficult one unless they are told.
The Michigan Lupus Foundation estimates more than 20,000 Michiganders have been diagnosed with some form of lupus. The organization works to raise awareness and connect patients and families with education, peer support, counseling resources, advocacy and other assistance.
For Dimond, Saturday’s walk was about more than raising money.
“It’s also an opportunity to raise awareness, build a stronger lupus community and ensure people across Michigan have access to the support and resources they need,” she said.
For the roughly 200 people who gathered in Rochester, the walk also offered something harder to quantify:
The chance to spend a day surrounded by people who do not need quite as much explaining.
For more information about lupus, patient resources, or ways to support the Michigan Lupus Foundation, please visit the Michigan Lupus Foundation.
