10 Things I Wish People Knew About Lupus
Key takeaways:
Roxanne Lerner was diagnosed with lupus when she was 27.
She had to quit her fundraising job and move out of New York City. She now works as a holistic health coach.
Roxanne uses tools like yoga and meditation to manage her health and wants people with chronic conditions to know it gets better.
It took a long time for 27-year-old Roxanne Lerner to realize something was wrong with her health. At the time, she was living in New York while working at a high-stress fundraising job. Looking back now at age 38, Roxanne realizes how out of touch with her body she was.
Not only did she have terrible fatigue that made it hard to function, but she was also suffering from swollen, painful joints that sometimes made simple tasks, like making the bed, difficult. She was losing a lot of weight, which was concerning because she was already a petite person. She had developed a bright red rash on her face, too.
Her symptoms, coupled with the anxiety of not knowing what was going on, was putting her body under major stress.
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BENLYSTA is for people 5+ with active SLE (lupus) or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus.
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BENLYSTA is a prescription medicine used to treat people 5 years of age and older with active systemic lupus erythematosus (SLE or lupus) or active lupus nephritis (LN) (lupus-related kidney inflammation) who are receiving other lupus medicines. It is not known if BENLYSTA is safe/effective in people with severe active central nervous system lupus.
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Roxanne’s diagnosis came soon after. Her great uncle, a rheumatologist and lupus researcher, put her in touch with a healthcare provider who eventually confirmed that she did in fact have lupus, an autoimmune disease that causes severe inflammation and pain within the body.
People who have lupus deal with it on an on-again, off-again pattern, known as flare-ups. It’s also up to 15% more likely to affect women than men. Roxanne’s symptoms were typical first signs. The rash on her face is known as “a butterfly rash.”
When Roxanne began telling people about her diagnosis, she says her loved ones were shocked. She was an athlete and had always been healthy. “With lupus, you really have to slow down. That's the lesson, as a Type A New Yorker,” she says.
Just like with other autoimmune diseases, there are a lot of misconceptions about lupus. Here are 10 things Roxanne wishes people understood about it.
1. The road to diagnosis can be long
While Roxanne was lucky to find answers so quickly, many people struggle to get a diagnosis for years. Lupus mimics other autoimmune diseases, making it difficult to identify. Symptoms can include headaches, memory issues, mouth sores, and inflammation of blood vessels. On top of her pain, Roxanne often faces brain fog and hair loss.
2. Having lupus means making hard choices
After her diagnosis in 2010, Roxanne had to face the fact that her current career no longer worked given her health conditions. Giving up her dream job was incredibly painful.
Though she was getting better, it was a slow process. There were several years when she was stuck inside her apartment and missed out on a lot. Living in the city no longer served her, so Roxanne and her husband moved to Rockville, Maryland, where they currently live.
Roxanne has to be very careful when she does go outside. She avoids going to the beach because she has photosensitivity, a lupus symptom that causes sensitivity to the ultraviolet rays from the sun. She wears sunscreen to avoid triggering her immune system.
3. Lupus can put friendships to the test
Roxanne says she has lost a lot of friends thanks to lupus. When she was first diagnosed in her 20s, she couldn’t go out at night or make plans due to her symptoms. Because lupus is an invisible disease, she says it’s sometimes hard for people to understand what she’s going through.
On the other hand, the people who have stuck with her through her illness have become her best friends. They rallied and supported her when she was diagnosed shortly before her wedding. Nowadays, they will come over on flare-up days when she can’t leave the house. The friends she learned to count on are the ones who took the time to truly understand what she was going through.
4. A health condition changes your priorities
Lupus can change your perspective on life. After leaving her former career, Roxanne eventually wound up going back to school to become a holistic health coach. She has now made it her mission to help people. She wants people with chronic diseases to know that there is hope even when they feel like they’re never going to get better.
5. You have to be honest about your condition
In 2015, Roxanne gave birth to her daughter. The period after a pregnancy can be a difficult time for people with lupus. Flare-ups are likely. Roxanne also had a pregnancy that ended with a miscarriage, which is more common for people with lupus. But in addition to her daughter, who’s almost 7, Roxanne now has a 2-year-old son.
Roxanne is honest with them about her condition. She has had her daughter sit in on a virtual event with the Lupus Research Alliance, and she answers any questions that come up so that her children know lupus is not a scary thing — it's just a part of her life.
6. Support is key when you have a chronic condition
When you have lupus, you are restricted daily by chronic pain. “It's like whack-a-mole.” Roxanne says, “one symptom comes up, then the next.”
Finding a support system is crucial to dealing with the disease. Eight years ago, Roxanne met a woman through a lupus Facebook group who was undergoing the same treatment. The two wound up becoming best friends. Having a friend going through the same issues was life-changing at a time when she felt like an alien, Roxanne says.
Despite the fact that they have only met twice, they have talked every day for the last 5 years. “We look to each other for advice. We don't have to explain. We get it because you feel like nobody in the world could possibly understand what it's like; it is so scary.”
7. Managing your condition means being an advocate
To be heard, you have to be a strong advocate and stay on top of your health, Roxanne says. She calls it “a managing disease.” Though she’s come so far, she has had to work hard to improve and maintain her health.
8.Adjusting can become second nature
When the pandemic unfolded, staying at home was not a new concept for people with lupus. “My whole life was tailored to something like this,” Roxanne says. “We're used to being home, so it’s no different.”
Despite the fact that people with lupus are at higher risk for severe COVID-19 because they have an immunodeficiency, she says lupus makes them more resilient and allows them to bounce back from anything.
9. Having a daily health practice is vital
As a former fundraiser, Roxanne approached lupus with the same mindset. She made sure her life had structure. She wakes up early to meditate and practice yoga or work out. Every morning, she tunes in to her body to see what she needs. She loves to cook and eats an anti-inflammatory diet.
10. You have to listen to your body
Lupus is a hard illness to understand. Roxanne has learned to take it easy on herself.
Roxanne knows all too well that it’s easy to get depressed when you have a chronic illness like lupus. She uses tools like GoodRx, which helps her save money on high-cost medications. Having systems in place and sticking to a routine helps her, too. She also wants people to remember that your caregivers are doing their best to be patient, and that it’s hard on them too.
“The truth is, you don't always know what the next day is gonna bring,” she says. “You have to learn to live with that uncertainty. And I'm a control freak, so that has been really hard.”
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