Whether you’re unsure about ways to manage your symptoms or you feel nervous about treatment options, living with an autoimmune disease like systemic lupus erythematosus (SLE or lupus) can mean having a lot of questions and concerns about getting the best care. That’s why it’s important to feel comfortable talking with your doctor about your condition.
If you’ve ever had a negative experience with a health provider, you know how much it can affect your trust in doctors as well as your self-confidence in managing your disease. MyLupusTeam spoke with Dr. Irene Blanco, a rheumatologist at Northwestern Memorial Hospital in Chicago and a professor of rheumatology at Northwestern University Feinberg School of Medicine, to understand how to talk to your doctor about lupus.
Systemic lupus erythematosus is a complicated disease of the immune system that requires patience and curiosity from both the doctor treating the illness and the person living with it. However, during interactions between the two, challenges can arise and lead to communication breakdowns and a lack of care for people with SLE — especially among women and people of color, who are most affected by the disease.
“Lupus, in general, goes underrecognized and underdiagnosed by physicians everywhere,” Dr. Blanco said. Because symptoms vary widely from one person to the next, lupus can be difficult to diagnose. Plus, SLE can resemble a variety of illnesses. “Doctors are trained to be pattern recognizers. So when the pattern doesn’t fit their preset notion, it may not get recognized,” Dr. Blanco explained.
That lack of recognition of a condition can result in a delayed or even missed diagnosis, as described by one MyLupusTeam member: “I am 31 and started with many different undiagnosable/misdiagnosed symptoms when I was a child. It took them until this January to figure out it was lupus.”
According to the Centers for Disease Control and Prevention (CDC), women aged 15 to 44 are most at risk of lupus, and people of color are more likely to develop SLE than white people. However, women, particularly those of color, often get dismissed in medical settings, Dr. Blanco noted: “Their pain can get ascribed to hormones or exaggerating. On average, women go quite a few years before getting a diagnosis, and it’s not uncommon for them to see multiple physicians before they actually get a referral [to a specialist].”
MyLupusTeam members echo the experience of being dismissed. One member wrote, “I am having an issue with my primary care provider not taking my complaints seriously. I went in with complaints of joint pain, fatigue, low-grade fevers, hair loss, and some random face and eye-area rashes. I honestly think my doctor doesn’t believe my complaints and is not taking me seriously.”
There are also differences — or disparities — in health care access and outcomes for people of color with SLE. For example, Black people with lupus have higher death rates than white people with lupus, and they experience higher rates of kidney disease than members of other racial and ethnic groups.
In the United States, “populations of color tend to be less resource-rich,” Dr. Blanco said. “They may not go to the doctor when they feel unwell because they don’t have health insurance, or they may not have the money for copays or a job that allows them to take time off from work.”
One study of more than 400 Black women with SLE showed higher levels of stress and worse health outcomes because of racial discrimination coupled with disparities in access and care.
Geography can also be a source of health care disparities. “There aren’t a lot of rheumatologists or even interpreter services in rural areas. So, the distance you may have to travel to find a doctor that actually takes your insurance — or just to find a doctor — can be quite onerous,” Dr. Blanco said.
Before you can talk to your doctor productively about your lupus condition, you’ll need to lay the groundwork for a positive long-term relationship. Dr. Blanco shared four tips to help you do just that.
Finding a doctor you trust and feel comfortable with can be challenging if you don’t know where to start. Dr. Blanco likens the relationship with a rheumatologist to one with a primary care provider. “These are 10-, 15-, 20-, 30-year relationships,” she said. “You should be comfortable asking them anything — really getting into the weeds about your treatments, about side effects, and about what you’re feeling and what you’re worried about.”
To find a rheumatologist you can trust, she suggested asking others in your area for recommendations or reaching out to nearby support groups, like your local chapter of the Lupus Foundation of America. If you don’t have a chapter near you, try searching the American College of Rheumatology database. Although you might be limited by your location or insurance coverage, doing a little research could help you find a rheumatologist who will be part of your trusted care team for many years.
An SLE diagnosis can come with a lot of unknowns. “Especially in the beginning, when it can be so overwhelming, you may need to set up multiple appointments to ask questions. And now, with the advent of telemedicine, it’s a lot easier to have those frequent touchpoints with your doctor,” Dr. Blanco said.
Keep in mind that your diagnosis may not be established during the initial visit. Although you may have been to multiple providers, this rheumatologist is seeing you for the first time, and a thorough workup might be needed.
Discussing what to expect in the initial months after a diagnosis and possibly into the future can help you feel more confident about your lupus treatment and your relationship with your rheumatologist. Dr. Blanco suggested asking your doctor questions such as:
The initial months following a lupus diagnosis can be “really rocky, but stick with it,” Dr. Blanco said. “Stick with me and, hopefully, we’ll get you to the other side of this as quickly as possible.”
Keeping track of your symptoms over time and recording details can help you remember what to discuss with your doctor. “It can just be overwhelming. You’re sick, you’re feeling all of these things. You probably have fatigue and brain fog, so using a symptom tracker can really help to focus on what you want to convey to the doctor in that appointment,” Dr. Blanco explained.
The Society for Women’s Health Research suggests recording your symptoms with descriptive words like “dull,” “aching,” and “sharp” to give your doctor a better sense of what you’re experiencing. You can also make a note of what might trigger a lupus flare and how you manage it. It’s also helpful to track your symptoms over the course of the day, such as when they’re most severe. Some trackers allow you to record medication doses, side effects, and daily activity, too.
Before your appointment, determine your top priority for the visit so you know what to emphasize when you meet with your doctor. “You need to set your agenda just like the doctor sets theirs,” Dr. Blanco said. “You could say, ‘Listen, I understand that my kidneys aren’t doing well right now, and I understand that you want to increase my medicine, but honestly I don’t feel my kidneys — I feel my fatigue. And I think we really need to talk about that.’”
By setting your agenda and providing detailed information, you can help your care team understand how to best treat your lupus. Talk to your doctor about issues related to medications, lifestyle changes or habits that might affect your condition, and any other challenges that you might be facing, such as:
It might not be possible to discuss every topic in one appointment, so consider preparing a set of questions beforehand to help ensure you cover your major concerns. You can set up follow-up appointments to address less-pressing issues.
In addition to finding a doctor you can trust, it’s important to build a strong support network around you for emotional support. “I think it’s critical for lupus patients to start thinking about who’s in their village, who they can trust — figuring out if they have the support that they need within their social circles. Sometimes it means bringing your partner to your doctors’ appointments or taking a friend or family member to your support group so they can start learning about how they can help you,” said Dr. Blanco.
In addition to gaining support from MyLupusTeam members, you can search the Lupus Foundation of America’s database of national and state support groups for people living with lupus.
On MyLupusTeam, the social network and online community for people with lupus and their loved ones, more than 218,000 members come together to ask questions, give advice, and share their stories with others who understand life with systemic lupus erythematosus.
Do you struggle with how to talk to your doctor about SLE? Do you track your symptoms and take notes to make the conversation easier? Share your experience in the comments below, or start a conversation by posting on your Activities page.