Living with lupus can come with its share of ups and downs. Lupus is a chronic inflammatory disease that causes the immune system to attack its own organs and tissues. Symptoms range from mild to severe. Lupus may give rise to seasons of flares and remission, but many people living with lupus have found a way to thrive despite its unpredictability.

Instead of allowing the disease to push the pause button on life, these men and women are boldly stepping out to show lupus who’s boss. From weightlifters and fashion models to CrossFit trainers and authors, these real-life heroes are sure to inspire and motivate anyone living with a chronic illness.

1. Megan Benzik

A post shared by Megan Benzik (@megbenz210) on Nov 12, 2016 at 4:49am PST

Benzik was diagnosed with lupus at the age of 12. She shares that it was her mother’s support that helped her get through the initial fear of having an incurable disease. Hand in hand, they vowed to fight. This fight included an intense focus on clean eating, extra rest, weight training, and low-impact exercises. The effects weren’t instant, but Benzik trusted the process. Over time, she felt improvements in her pain, mobility, and mindset.

While she still lives with fatigue, brain fog, Raynaud’s phenomenon, and an occasional rash, she refuses to let lupus set limitations on her life. Today, Benzik is a popular CrossFit coach and athlete who competed at the CrossFit Games Regionals in May 2017.

If you are willing to fight, it is possible to turn your lupus into the catalyst for becoming the strongest version of yourself.
– Megan Benzik, CrossFit coach and athlete

2. Elijah Julian Samaroo

A post shared by Elijah Julian (@mrelijahjulian) on Aug 28, 2016 at 10:27am PDT

Elijah Samaroo is just 21 years old and already leaving quite a mark on the world around him. With an intense passion for graphic, web, and clothing design that grew during his teenage years, Samaroo started his own clothing company, SAFii, after high school.

Though diagnosed with Class IV lupus nephritis and currently living with end-stage renal disease, he lives with a positive outlook on life. He’s missed out on special moments because of lupus, like segments of high school and homecoming. But Samaroo says he can still find joy each day, whether working with celebrities in California or designing on his laptop while in the hospital.

[Happiness is] one of the most powerful medicines in the world, and what I feel every day when I realized I followed my dreams.
– Elijah Julian Samaroo, founder of SAFii

3. Christine Galgano

Galgano was diagnosed with lupus in 2014. She recalls that year as the “biggest battle of her life.” After coming out on the winning side, she slowly returned to her fitness roots and volunteered at the 2015 New Jersey Spartan Beast race. An overwhelming desire to run overtook her, and though not prepared, she jumped in. Almost seven hours later, Galgano successfully completed the 13-mile race. She crossed the finish line bleeding, wet, covered in mud, and dealing with Raynaud’s in her toes and fingers. It was in that moment she knew she’d never let lupus stand in her way.

 

Since then, she’s completed over 60 races and became a CrossFit Level 1 trainer. She also works as a marketing strategist. Galgano enjoys connecting with other men and women living with lupus.

No two lupus warriors feel the same pain, but we are all in this fight together and are capable of more than we ever thought possible.
– Christine Galgano, CrossFit Level 1 trainer

4. MarlaJan Wexler

A post shared by MarlaJan Wexler (@marlajan) on May 20, 2016 at 11:15am PDT

Wexler is a pediatric nurse at The Children’s Hospital of Philadelphia. She wanted to use her career knowledge and personal experience with lupus to help others after being diagnosed in 2008. And so, the cheeky, quick-witted, and raw Luck Fupus blog was born. As a writer and public speaker on the topic, MarlaJan wants men and women with lupus to know they can still laugh and find humor in life despite the condition.

Though her nursing career has been impacted in some ways because of the disease, Wexler’s upbeat attitude is sure to brighten your day.

[It’s about] coming to terms with my limitations, adapting to them, and yet still finding ways to make a difference in healthcare.
– MarlaJan Wexler, founder of LuckFupus.com

Enjoy a few laughs and be inspired at LuckFupus.com

5. Hetlena J. H. Johnson

After being diagnosed with lupus in 1993, Hetlena J. H. Johnson clung to her faith and the perspective that a disease didn’t have to prevent her from living a great life. Today, she’s an author, TEDx speaker, founder of The Lupus Liar, and so much more.

Although she lives with daily lupus symptoms like fatigue and pain, she shares how living in the present and not focusing on the “what ifs” have helped her thrive.

Give up the I can’ts and whys and soak in the nows, I cans and I wills — you cannot and will not be happy if you don’t change your perspective.
– Hetlena J. H. Johnson, author, TEDx speaker, and founder of TheLupusLiar.com

Check out her book “Diary of a Mad Lupus Patient” at TheLupusLiar.com. You can also tweet her @TheLupusLiar.

6. Lydia Romero-Johnson

Lydia Romero-Johnson experienced rashes, pain, and fatigue since an early age. But it wasn’t until after a complicated pregnancy in 2002 that she was diagnosed with lupus. Being a registered nurse, she understood the medical aspects of the disease but wanted to dig deeper into the psychological, emotional, and spiritual side of having a chronic illness.

This journey led Romero-Johnson to the certified health coach program at the Institute for Integrative Nutrition. Today, in addition to nursing, Romero-Johnson provides holistic coaching to women seeking a happier and healthier life. Helping others, Romero-Johnson shares, has been “life transforming.” It’s brought her from feeling limited by a diagnosis to now feeling limitless about her future.

There are options, resources, support, and possibility — never give up on you.
– Lydia Romero-Johnson, registered nurse and certified holistic health coach

7. Aida Patricia

Complications from lupus forced model Aida Patricia off the runway early in her career, but she was quick to combine her love of fashion with her desire to educate others about the disease. The result was Runway for a Cure, a mega-fashion show event that happens every fall in Rhode Island at the Providence Biltmore Hotel.

The show is focused on disease awareness. It’s described by Patricia as “a night for men and women living with lupus to feel beautiful and forget the pain for a few hours.” When not living and breathing fashion, Patricia works for a U.S. senator in Rhode Island and is the New England lupus ambassador for The Lupus Foundation New England. While she feels blessed to still be able to work, complications from lupus have made it challenging.

It’s been hard, but I hold on to my faith, and am thankful to get up each morning and have the opportunity of another day.
– Aida Patricia, founder of Runway for a Cure

8. Stephen Hinkel

While Hinkel hasn’t been diagnosed with lupus, he has been “living” with lupus his entire life. He grew up taking care of his father, who’d been diagnosed with the disease in his early 20s. Hinkel was left frustrated when people would comment about lupus being a woman’s disease (a common misconception) and by the lack of awareness surrounding the illness.

After his father passed away, Hinkel wanted to use his natural strength, health, and desire to increase the visibility of lupus — so he created Lifting Awareness. In addition to creating awareness videos by bench-pressing as much as 405 pounds, he regularly meets with political and government leaders as well as NFL alumni to educate others about the illness.

I do this in my father’s memory and to advocate for others. It is so important that more people are educated on this complicated and mysterious disease.
– Stephen Hinkel, founder of Lifting Awareness

Takeaway

Living with a chronic illness of any kind presents its challenges for the day to day. But with determination and a positive outlook, it’s true that anything is possible. These eight success stories are living proof of that.


lupus life hacks

Marisa Zeppieri is a health and food journalist, chef, author, and founder of LupusChick.com and LupusChick 501c3. She resides in New York with her husband and rescued rat terrier. Find her on Facebook and follow her on Instagram @LupusChickOfficial.