7 Pointers for Living Well 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?

Maybe you’ve waited months or even years to finally get a diagnosis – and now that you have one, you’re left with feelings of uncertainty about how your condition will affect you down the road.

There’s not exactly a straightforward answer to either of those questions, 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 to a normal life expectancy.

And while it can be difficult to control when or how severe your flare-ups will hit, you can control other aspects of your life that affect how you feel – like eating a healthy diet, taking care to get enough sleep and reducing stress in your life.

Dr. Littlejohn offers these additional tips for managing the daily challenges of living with lupus.

1. Arm yourself with knowledge: Knowledge is power, she says. You don’t have to learn everything there is about lupus right away, but the more you know, the more empowered you’ll be to take charge of your care and recognize new or unusual symptoms. “Research the details behind lupus, your medication and what maintenance things you need to do in terms of your heart and reproductive health,” she says.
2. Seek out support: Support can come in many forms. Maybe it comes from a therapist, or from an online community of fellow patients who can relate. 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 don’t feel 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.
3. Be sun-aware: For many people with lupus, sun exposure can induce a flare, Dr. Littlejohn says. That doesn’t mean you have to become nocturnal, but it does make sun safety a priority. Try avoiding going outside in the sun during peak hours, wearing protective clothing (say yes to that cute beach hat) and keeping sunscreen handy – even when it’s not summertime.
4. Don’t stop moving: Rest is absolutely acceptable and necessary when you’re in pain. But when you’re feeling good, low-impact exercise 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.
5. Mind your heart: There’s a strong link between lupus and heart disease, so you may benefit from working with a preventive cardiologist. They can help you understand ways to reduce your risk (like, ahem, exercise!) and whether you need certain screening exams.
6. Become your own health advocate: “A big thing I would want to convey to lupus patients is to be your own advocate, because it really takes more than just one physician or even two to manage everything that is going on,” Dr. Littlejohn says. 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.
7. Talk to your doctor if you’re thinking about getting pregnant: “Lupus itself is a risk for poor pregnancy outcomes, but we’ve come a long way,” Dr. Littlejohn says. “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.”

Life with lupus can be unpredictable, but you’ve made it over the first hurdle and can now take steps to educate yourself and your loved ones, build up your care team and keep moving forward.