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Tips to living better with lupus

Mitchelle Uzorka

FEB 16, 2022, 10:58AM

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

There’s not exactly a straightforward answer to that question, 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.

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

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.

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.

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.

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.

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