9 Tips for Living With Lupus

If you’ve just been diagnosed with the chronic autoimmune condition lupus, you might be wondering, “Why is my body turning against me?”

Many people can wait months or even years to get a diagnosis. And once they have one, they’re also often left feeling unsure about how the condition will affect them down the road.

There aren’t exactly straightforward answers to these questions and concerns, as everyone’s “lupus fingerprint” is different, says rheumatologist Emily Littlejohn, DO. There might be days when you’re wiped out and other days when you’re free of joint pain and feel like you could climb a mountain.

But the good news is, there’s reason for hope. Many people with lupus are able to minimize their flare-ups with treatment, and 80% to 90% of people with this condition live a normal life expectancy.

And while it can be difficult to know when your flare-ups will hit — and harder still to manage their severity — you can manage other aspects of your life that affect how you feel. Dr. Littlejohn offers tips for managing the daily challenges of living with lupus.

How to live with lupus

Lupus is an autoimmune condition that doesn’t have a cure. Researchers haven’t yet zeroed in on a single cause for the condition. Instead, they think there are genetic causes that, along with exposures, can trigger the onset of lupus. Anybody can develop lupus, but it’s clear that some people have a higher risk of developing the condition than others.

The diagnostic process for a condition like lupus can be long and complicated, because, like many autoimmune conditions, lupus can affect a wide range of organs and body systems. The result: An equally wide range of symptoms. What those symptoms look like — and how severe they are — varies from person to person. The areas affected and the physical issues you experience can also change over the course of your life.

Symptoms tend to come in waves that are commonly referred to as “flare-ups.” While some people deal with chronic symptoms, others have periods of remission where they have few or no symptoms.

Whether you’re adjusting to a new diagnosis, navigating through a flare or enjoying a remission, Dr. Littlejohn recommends doing the following.

1. Arm yourself with knowledge

Living with lupus is almost like learning a new language. With time and practice, you can learn how to read your symptoms and better understand what your body’s telling you.

Of course, you don’t have to understand everything there is to know about lupus right away. There’s a lot to take in! But the more you know, the more empowered you’ll be to take charge of your care and recognize new or unusual symptoms.

For example, many people with lupus know they’ve got a flare in their future when they start:

• Struggling with fatigue.
• Experiencing more joint pain, stiffness and swelling.
• Developing lymph node swelling.
• Running a fever.
• Getting rashes and skin lesions. (They can happen anywhere on the body, but a butterfly-shaped rash on the face [a malar rash] is especially common.)
• Feeling dizzy, confused or struggling to remember.
• Losing weight without explanation.
• Developing ulcers in their mouths.

Knowing the symptoms of a flare-up makes it easier to determine your triggers. Typical triggers include:

• Stress of any kind.
• Overwork and/or a lack of rest.
• Other health issues, like an infection or injury.
• Certain kinds of medications.
• Sun exposure.
• Change of seasons.

Knowing a flare is coming (and why it’s coming) doesn’t mean you’ll necessarily be able to prevent it. But it does mean that you’ll have a stronger understanding of what’s happening and what you can do about it. As Dr. Littlejohn puts it, knowledge is power.

“Research the details behind lupus, your medication and what maintenance things you need to do in terms of your heart and reproductive health,” she urges. More on those two topics in a bit.

2. Seek out support

Support can come in many forms. Maybe it comes from a therapist, a support group or an online community of people living with lupus. If you have caregivers, they may also benefit from reaching out for help, education and support. Caregivers need care, too, after all.

It may also be helpful to get your family and friends involved in understanding the disease. Many people don’t know what lupus is and might assume that if you don’t “look sick,” you aren’t sick. Explaining your symptoms and medications to those close to you can foster better understanding and empathy when you have to cancel plans last minute or aren’t up for going out. In fact, some people with lupus find that going to couples therapy with their partner makes the process of adjusting to the diagnosis easier.

It’s also important to be sure you’re getting any institutional support you need. If your condition is severe enough that it prevents you from working, for example, you may be eligible for disability benefits. For people with lupus who work or go to school, you may be entitled to certain accommodations.

Don’t hesitate to talk to your provider about needing support. They might not be able to address your concerns themselves, but they can definitely point you in the direction of someone who can.

3. Be UV-aware

Dr. Littlejohn says that for many people with lupus, sun exposure can induce a flare. That doesn’t mean you have to become nocturnal, but it does make sun safety a priority.

Avoid going outside in the sun during peak hours, wear protective clothing (say yes to that cute beach hat) and wear sunscreen every day — even when it’s not summertime.

Sunlight isn’t the only kind of light you need to avoid. The goal is to avoid UV (ultraviolet) rays. That means sticking with LED light sources and avoiding fluorescent lights and halogen bulbs, too.

4. Don’t stop moving

Rest is absolutely acceptable and necessary when you’re in pain. But when you’re feeling good, low-impact exercises like yoga, swimming or cycling can help keep your joints moving, your mood up and your stress levels in check. Plus, it’s good for cardiovascular health and maintaining a healthy weight.

But exercise is like anything else when you have lupus: You have to listen to your body.

Avoid overexerting yourself or doing activities that are overly stressful. High-impact exercises like running, weightlifting or full-contact sports are great if you’re able to do these safely. That said, inappropriate amounts of exercise can also contribute to a flare, so be sure to slow down, stop or change your exercise routine if you notice unusual levels of pain or fatigue.

5. Manage stress and embrace rest

Rest is a four-letter word we should all be using more often, but it’s extra important that people living with lupus embrace it.

If you want to prevent or reduce the severity of your flare-ups, getting enough sleep, making time for mindfulness and having fun doing the things you love are crucial. A 2021 study showed that mindfulness-based stress reduction (MBSR) techniques may reduce pain, improve psychological coping and enhance people with lupus’ overall quality of life.

6. Adopt healthy eating habits

There isn’t one way to eat when you’re living with lupus because the condition looks and feels different from person to person. One person’s trigger is another person’s go-to healthy snack.

While there isn’t a “lupus diet,” there are a few basic principles to keep in mind when it comes to your food choices:

• Keep it heart-healthy. Eating plans like the Mediterranean diet are a good fit for people living with lupus because they promote cardiovascular health. As we explain in a bit, the link between lupus and heart issues is very real. Eating a largely plant-based diet and limiting sodium, saturated fats and added sugars can reduce your risk of heart disease and several other comorbidities associated with lupus.
• Avoid alfalfa. Weird but true: Decades ago, researchers learned that alfalfa, which contains a non-protein amino acid called L-canavanine, can impact autoimmune conditions like lupus.
• Be mindful of medications. We all have to adjust our eating habits to address our specific nutritional needs. For people with lupus, those adjustments may happen as a result of medication changes. Steroids, antimalarials, immunosuppressives, monoclonal antibodies — there are a lot of different kinds of medicines used to treat lupus symptoms. If you experience side effects like weight gain, gastrointestinal issues or heavy bleeding during your period, you may have to adjust your diet accordingly. Be sure to speak with your provider about your nutritional needs whenever they add or subtract medications from your daily regimen.
• Discuss supplements with your provider. Supplementation can be an important part of a lupus treatment plan. For example, many people living with lupus struggle with a vitamin B12 deficiency. Work with your doctor to determine whether you have any nutritional needs that require supplementation. And remember: The U.S. Food and Drug Administration (FDA) doesn’t regulate supplements — it’s basically the Wild West out there, so you can’t assume all the supplements on the shelf are safe. Only purchase products that your provider recommends or that have undergone extensive third-party testing.
• Learn and avoid trigger foods. If you notice that you experience flares after eating a particular food, it’s best to avoid it.

7. Mind your heart

As we mentioned, there’s a strong link between lupus and heart disease. There are several reasons for that correlation, including the kinds of inflammation people living with lupus experience and the medications many people with lupus have to take.

“You may benefit from working with a preventive cardiologist,” Dr. Littlejohn says. “They can help you understand ways to reduce your risk and whether you need certain screening exams.”

8. Become your own health advocate

“A big thing I would want to convey to people living with lupus is to be your own advocate because it takes more than just one physician — or even two — to manage everything that is going on,” Dr. Littlejohn states.

You’ll need to build a strong relationship with your primary care doctor and rheumatologist to oversee all aspects of your health and manage medications. A nephrologist, pulmonologist or cardiologist may also be on your care team.

A few ways to advocate for yourself include:

• Ask questions. Doing your research ahead of time and coming to your appointments with prepared questions can ensure that you fully understand the care you’re receiving. If your provider’s response is confusing, ask them to explain again. Don’t be afraid to take notes or request a copy of your visit summary.
• Bring a caregiver or support person. Exam rooms and hospitals can be intimidating places. And when we don’t feel our best, it can impact our ability to communicate and remember information. If you’re worried, overwhelmed or feel like you aren’t being heard, bring somebody along to your appointment or, if possible, request the assistance of a patient advocate.
• Request a second opinion. Requesting a second opinion isn’t going to offend or hurt a good provider. In fact, many medical professionals want patients dealing with a serious medical condition to seek out other opinions before they make a big decision. They may even suggest it! If you’re not comfortable talking to your provider about getting a second opinion for any reason, contact your insurance provider.
• Maintain a symptom tracker. When you’re living with a condition like lupus, it can be hard to keep track of all the different ways the condition is impacting your overall health. That can make questions like “When did your symptoms start to get worse?” hard to answer. Some people find it useful to record their daily symptoms using a journal, website or mobile app. Not only can tracking your symptoms give you much-needed clarity into how your health is changing over time, but, as Dr. Littlejohn adds, it can also help you spot patterns, recognize triggers and assess the effectiveness of medications.

9. Talk to your doctor if you’re thinking about getting pregnant

According to the U.S. Centers for Disease Control and Prevention (CDC), “all women with lupus who get pregnant are considered to have a ‘high risk pregnancy.’” Could that news be a bit discouraging? Of course. But it could also be empowering.

“Lupus itself is a risk factor for poor pregnancy outcomes, but we’ve come a long way,” Dr. Littlejohn says.

There’s a lot that you and your care team can do to improve your chances of having a safe and healthy pregnancy with lupus. There are also many sources of information and support groups out there that can help you get mentally, emotionally and practically prepared for raising children while living with lupus.

The key is not going it alone.

“You should talk to your doctor three to six months before you’re trying to conceive to make sure the lupus is controlled and also to put you on medications that are safe for pregnancy,” Dr. Littlejohn advises. They can also help you get connected to local, national and online resources for people who are pregnant or parenting with lupus.

The bottom line?

Life with lupus can be unpredictable, but you made it over the first hurdle when you got diagnosed. The road ahead may seem a bit murky, but there are lots of people out there who will be happy to help light your way. If you take steps to educate yourself and your loved ones, build up your care team and seek out support, you’ll be able to move forward with confidence.