What Lupus Patients Want Their Doctor to Know
Lupus can be complicated and have so many factors that it is easy to get discouraged when trying manage this disease. These 11 patients shared their thoughts about how doctors should know the nuances and provide better care.
It may have been years since your symptoms began.
The Lupus Foundation of America (LFA) states that it is hard to diagnose the condition because the symptoms are so varied from one person to another. After the initial symptoms are noticed, it can take nearly six years before people diagnosed with Lupus realize that they have been diagnosed.
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.”
Your knowledge is essential who’s at higher risk
According to the Lupus Foundation of America, another important element of screening is recognising that women of colour are more likely to be diagnosed than those of other races. “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.)
Hispanic and African American females are more likely to develop lupus than the rest of us, and to have severer symptoms such as kidney damage. 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.”
Lupus can be exhausting
Effective treatment of Lupus will result in less doctor visits. 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.”
Sometimes treatment can seem like an act of defiance. full-time job—but you end up Instead of earning, pay instead
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. She still needs to make frequent lab and doctor appointments, even though she is in remission.
“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 wishes that doctors understood the economic impact of treatments. 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.”
We have hope because of research advances
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.”
It can be difficult to accept a diagnosis.
Chris Burton (34), a Lupus sufferer, suffered from extreme fatigue, recurrent pneumonia, and lost mobility. This affected his ability to teach. After being diagnosed with Lupus, Burton felt like he had lost all his faith.
“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.”
Burton shared this wish with Burton: Doctors should be more proactive about directing patients to resources and, especially, support groups that can provide guidance during the early stages of lupus.
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
It is best to use immunosuppressants for Lupus. These medications are used to reduce symptoms and flare ups. Martin Lewis (26), a New York City native, has shared that Lupus patients need to maximize their immune systems.
“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.”
Complementary approaches are another lifestyle consideration that should be discussed. This could include CBD and medical marijuana for pain control, as well as acupuncture or mind-body intervention.
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
Some side effects may have a negative impact on quality of life. Lupus sufferers might choose to eat more than they take their medication, which could lead them to experience terrible symptoms. This includes emotional numbness as well as weight gain and debilitating fatigue. Others are more complicated.
“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.
Vargas Lupo adds that being sensitive to the patient’s concerns is another aspect of a productive conversation. 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. With two kids, she still recalls the hurtful 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 importantly, look at us as persons, not as symptoms
Lupus is complicated. It can seem easy to get caught up in the details and prescribe medication. Alyshia Merchant was a patient advocate and became aware of Lupus’ uniqueness after being diagnosed. 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.”