What Lupus Patients Want Their Doctors to Know

Because lupus can come with so many variables and a high degree of complexity, many people are frustrated on their journey to managing the disease. Here, 11 patients explained what they would like doctors to know about the nuances of lupus and how to better care for those with the disease.

By the time we see you, it may have been years since the first symptoms started

According to the Lupus Foundation of America (LFA), the disease is difficult to diagnose because the symptoms can be very different from person to person. On average, it takes nearly six years for people with lupus to be diagnosed after they first notice symptoms.
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This can be true even with “classic” signs, such as a butterfly-shaped rash on the face. For example, Ingrid Pérez-Martin, 41, who lives in Georgia, developed this rash when she was 10 and a few years later suffered from Raynaud’s syndrome, characterized by numb fingers and toes. and swollen. Yet she wasn’t diagnosed with lupus until she was 23, when she suffered from immune system problems when she was pregnant with her first child.

“Living with undiagnosed lupus for 13 years was such a rollercoaster,” says Pérez-Martin. “I felt so frustrated and angry, and it made it harder to come to terms with my diagnosis when it finally came.”

We need you to know who is more at risk

Another important aspect of 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 diagnostic process 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 could lead to a diagnosis.” (Nine out of 10 people with lupus are women.)

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

“We get notifications about screenings for mammograms, for example, but we never hear about lupus,” she says. “Let’s spread this information and make it more standard to ask about lupus symptoms during 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 a huge amount of time and energy, when it flares up and when it’s in remission.

“Being diagnosed and treated for lupus is physically, mentally and emotionally draining,” says Weeks. “Virtual doctor visits should have been 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 my strength, regardless of my extreme fatigue and body aches.

The treatment may look like a full-time job, but you end up pay instead of earn

Consider how long it takes to shop around for different professionals, says 58-year-old Milwaukee resident Betsey Woody, who has had lupus for 32 years. Even in remission, she has to deal with frequent doctor visits and lab work.

“It’s a disease that takes time and drains you of the energy to deal with it,” she says. “Sometimes doctors act like you only have one appointment [every so often], and that’s just not true. They seem to forget that we never have a day off.

Woody also wants doctors to understand the financial impact of the treatment. For example, she was prescribed an IV medication that is given four times a year and costs $18,000 per infusion. This led to hours on the phone with the insurance company to make sure she was covered.

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

Advances in research give us hope

For what seemed far too long, there hasn’t been much progress in terms of lupus research, but that has definitely changed. Veronica Vargas Lupo, 38, a New York-based patient who sits on the board of the Lupus Research Alliance, has seen tremendous activity around innovative treatment options.

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

Diagnosis may look like trauma

Lupus patient Chris Burton, 34, from Virginia, suffered from extreme fatigue and recurrent pneumonia which led to loss of mobility and zero energy, which interfered with his job as a teacher. When the lupus diagnosis came, he felt shaken.

“What I wish doctors knew is how scared and overwhelmed we are when we receive a diagnosis,” Burton says. “It’s not just about our health, it’s about our whole life, our identity. It takes time to adjust to all your upset life and building support systems.

For this reason, Burton wants doctors to be more proactive in directing patients to resources, and especially to support groups of other lupus patients who can offer guidance during those difficult first months.

Jewell Singletary, 38, a lupus patient in Newark, New Jersey, who has lived with the disease for almost 30 years, felt like she was in denial about the progression of her lupus until she encountered a another woman with the disease. “When she shared her experience, it all started to sink in,” says Singletary. “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 In addition, members of my group encourage each other to stay active, eat the right foods and keep doctor’s appointments.

We are 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 flare-ups. This means lupus patients need to optimize their immune systems and want to know about strategies that can help, such as movement, nutrition, sleep and stress relief, says Martin Lewis, 26, who lives in New York.

“As someone with kidney failure who had to undergo chemotherapy because of this condition, I learned firsthand how transformative and healing it can be to balance medical treatment with exercise and a healthy food,” he says. “It’s about getting the body to a place where it can ride out the lupus storm. I feel like we don’t talk about it enough, to define what “healthy” looks like for each person.

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

For example, 52-year-old Austin-based Christine De La Rosa 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 get away from the side effects of medications,” she says. “We don’t just want to manage the 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 important side effects can be, especially those that are difficult to talk about

Side effects can negatively impact quality of life, which could cause some lupus patients to suffer terrible symptoms while taking their medications. These include emotional numbness, weight gain, debilitating fatigue, and brain fog. And there are some that are even harder to talk about.

“I would like my doctors to know that the drugs I take are affecting me sexually,” says Pérez-Martin. “It’s something that doesn’t come up in my meetings, because we have so many other things to discuss. It’s not that I don’t want to take my meds every day. It’s more about making the tough decision between being submissive and being able to have sex with my husband in the moment.

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

Another aspect of effective conversation is being sensitive to patient concerns, Vargas Lupo adds. For example, at the appointment where she was diagnosed with lupus, the doctor told her that she could not have children. Just 21 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 this news. “I wish doctors understood that our lives are forever changed because of what we hear,” she says. “Even if what they say turns out to be inaccurate, we carry it with us.”

Above all, see us as people, not as symptoms

Lupus is so complex and individualized that it can be tempting to focus on symptoms and medications, says Alyshia Merchant, who became a patient advocate after her diagnosis. She believes there is enormous 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 of an appointment and just listening,” 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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