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March 15, 2022 3:23 PM EDT

Because lupus can come with so many variables and a high degree of complexity, many people get frustrated in their journeys toward managing the disease. Here, 11 patients opened up about what they wish doctors knew when it comes to the nuances of lupus, and how to better care for those with the disease.

By the time we see you, it may be years since symptoms first began

According to the Lupus Foundation of America (LFA), the disease is difficult to diagnose because symptoms can be so different from person to person. On average, it takes nearly six years for people with lupus to be diagnosed after the first time they notice symptoms.

That can be true even with “classic” signs, like a butterfly-style rash across the face. For example, Ingrid Pérez-Martin, 41, who lives in Georgia, developed that rash when she was 10, and a few years later experienced Raynaud’s syndrome—which was characterized by numb, swollen fingers and toes. Yet she didn’t get diagnosed with lupus until she was 23, while suffering from immune system issues when pregnant with her first child.

“Living with undiagnosed lupus for 13 years was such a roller coaster,” Pérez-Martin says. “I just felt so frustrated and angry, and that made it more difficult to accept my diagnosis when it finally came.”

We need you to know who’s at higher risk

Another important aspect for screening is recognizing that women of color are diagnosed at a much higher rate than other groups, according to the Lupus Foundation of America. “The process of diagnosis needs to be more refined and precise,” says Margo Pinckney, 45, who lives in Pennsylvania. “What I want doctors to know is what lupus looks like and the many symptoms that might lead to a diagnosis.” (Nine out of every 10 people with lupus are women.)

African American and Hispanic women usually get lupus at a younger age than others, and they tend to suffer from more severe symptoms, including kidney problems, according to the U.S. Centers for Disease Control and Prevention. Knowing that, doctors could be more proactive about screening those patients, says Chicago resident Della Major, 57, who didn’t know she was at higher risk until years after her diagnosis.

“We get notices about screenings for mammograms, for example, but we never hear about lupus,” she says. “Let’s get that information out there and make it more standard to ask about lupus symptoms in check-up appointments with women of color.”

Having lupus is often exhausting

If lupus is treated effectively and goes into remission, that means fewer doctor appointments. But for people like Sheraya Weeks, 42, who lives in Maryland, the disease steals an enormous amount of time and energy—when it’s flaring up and when it’s in remission.

“Being diagnosed and treated for lupus is physically, mentally, and emotionally exhausting,” Weeks says. “Virtual doctor visits should have been made available for lupus and other immunocompromised patients long before the pandemic. Sometimes, just going to the doctor to get a note to submit to an employer takes all the strength I have, with no consideration of my extreme fatigue and body aches.”

Treatment can feel like a full-time job—but you end up paying instead of earning

Consider how time-consuming it is to shuffle around to different professionals, says 58-year-old Milwaukee resident Betsey Woody, who’s had lupus for 32 years. Even in remission, she needs to navigate frequent doctor visits and lab work.

“This is a time-consuming disease, and it sucks the energy out of you to manage it,” she says. “Sometimes, doctors act like you only have one appointment [every so often], and that’s simply not true. They seem to forget we never get a day off.”

Woody also wishes doctors would understand the financial impact of treatment. For example, she was prescribed an IV drug that’s administered four times per year and costs $18,000 per infusion. That’s led to hours on the phone with the insurance company to ensure it’s covered.

“There are people in my lupus support group who stop taking their meds because they don’t have the energy to deal with insurance, and they can’t afford those meds on their own,” she says. “In my opinion, this is something doctors need to keep in mind when prescribing, especially because lupus patients are often on multiple medications.”

Research advances give us hope

For what seemed like far too long, there wasn’t much movement in terms of lupus research—but that’s definitely changed. Veronica Vargas Lupo, 38, a New York City–based patient who serves on the Lupus Research Alliance board of directors, has seen enormous activity around innovative treatment options.

“There’s so much energy going on with research, and I wish doctors would not only take time to see that, but also to communicate that to patients,” she says. “Even if we still don’t have a cure, knowing that research is picking up really gives us hope for the future. As people with this condition, we appreciate feeling like there may be more options to come.”

Diagnosis can feel like trauma

Lupus patient Chris Burton, 34, of Virginia, experienced extreme fatigue and recurrent pneumonia that led to loss of mobility and zero energy, which took a toll on his work as a teacher. When the lupus diagnosis arrived, he felt shaken to his foundation.

“What I’d like doctors to know is how scared and overwhelmed we are when we get diagnosed,” Burton says. “It’s not just about our health—it’s about our whole lives, our identities. It takes time to adjust to your whole life getting turned upside down and building support systems.”

Because of that, Burton wishes doctors would be more proactive in pointing patients toward resources, and especially toward support groups of other lupus patients who can offer guidance through those tough early months.

Jewell Singletary, 38, a Newark, N.J.–based lupus patient who has been living with the disease for almost 30 years, felt like she was in denial about how her lupus was progressing until she met another woman with the condition. “When she shared her experience, it all started to soak in,” Singletary says. “I wish my doctors knew how powerful social support with other patients can be, especially for improving mental health. I feel seen when I’m able to talk to people who know exactly what I’m going through. Also, those in my group encourage each other to stay active, eat the right foods, and be on top of doctors’ appointments.”

We’re very interested in lifestyle changes that can help, including alternative and complementary treatments

The most effective treatment for lupus is immunosuppressants, which are given to control symptoms and minimize flares. That means lupus patients have to optimize their immune systems, and they want to hear about strategies that can help, such as movement, nutrition, sleep, and stress relief, says Martin Lewis, 26, who lives in New York City.

“As someone who’s had kidney failure and had to do chemo as a result of this condition, I’ve learned firsthand how transformative and healing it can be to balance medical treatment with exercise and healthy eating,” he says. “It’s about getting the body to a place where it can weather the storm of lupus. I feel like that’s not talked about enough, to define what ‘healthy’ can look like for each person.”

Another lifestyle factor that should be part of the conversation is complementary approaches. That might include controlling pain management with CBD or medical marijuana, or trying acupuncture and mind-body interventions.

For example, Christine De La Rosa, 52, who is based in Austin, was on 11 medications and felt “half human.” Then, a friend brought her some cannabis edibles and she slept soundly for the first time in a decade. “What I want doctors to know is that options like these are what we, as patients, are already exploring as a way to move away from the side effects of medications,” she says. “We don’t just want to manage symptoms, and feel like we’re not really living. Sometimes, complementary or alternative approaches can help us feel better.”

We need you to recognize how significant side effects can be—especially the ones that are tough to talk about

Side effects can negatively impact quality of life, and that might lead some lupus patients to weigh experiencing terrible symptoms over taking their meds. These include emotional numbness, weight gain, debilitating fatigue, and brain fog. And there are some that are even harder to talk about.

“I wish my doctors knew that the medicine I take affects me sexually,” Pérez-Martin says. “This is something that doesn’t get addressed at my appointments, because we have so many other things to discuss. It’s not that I don’t want to take my medicine every day. It’s more about making the hard decision between being compliant and being able to make love to my husband in the moment.”

The psychological impact of side effects can be debilitating, she adds, and sometimes she feels that doctors aren’t fully transparent about what potential effects might be. Having a tough conversation, even about the embarrassing aspects, should be a crucial part of any appointment, Pérez-Martin says.

Another aspect of an effective conversation is being sensitive to patient concerns, adds Vargas Lupo. For example, during the appointment when she was diagnosed with lupus, the -doctor told her she wouldn’t be able to have children. Just 21 years old at the time, she was devastated—and it took years to find out the doctor was wrong. Even now, with two children, she remembers the pain of that news. “I wish doctors could understand that our lives are forever changed because of what we’re hearing,” she says. “Even if what they say turns out to be inaccurate, we carry that with us.”

Most of all, see us as people, not symptoms

Lupus is so complex and individualized that it may be tempting to focus on symptoms and medications, says Alyshia Merchant, who became a patient advocate after her diagnosis. She believes there’s tremendous power in the doctor-patient relationship, but it can only be harnessed if each side truly sees and listens to the other.

“Doctors would benefit from stepping away from the biomedical side during an appointment and just listen,” she suggests. “As patients, we respond so well to collaboration and compassion; we want to be involved in our treatment and feel supported. We just need you to hear us.”

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