In honor of Lupus Awareness Month, we sat down with Marisa Zeppieri, AKA LupusChick Official. Marisa Zeppieri is the Founder/Editor in Chief of LupusChick, in addition to being a decade-long journalist and author. LupusChick was birthed in 2008 to encourage those living with Lupus and other autoimmune diseases. Here, men and women can find information, advice, nutrition, recipes, coaching, humor, life hacks, true stories and more. Marisa’s mission is to help others live the most vibrant, healthiest life possible despite chronic illness.
Tell us about your journey with Lupus
I’ve had lupus for 18 years but looking back, my family and I can see the symptoms clearly started around the age of eight. This was in the 80s, we had never heard the word lupus and it wasn’t tested for like it is today, so it was always brushed off as me being a “sickly child”. Then, in my 20s, I was the victim of a hit and run as a pedestrian. I was hit by a truck traveling around 50 mph and almost lost my life. While I was recovering in the hospital, all of the strange symptoms – rash, fever, pain, mouth sores – I had growing up, came out at once. I was actually diagnosed in 3 weeks, which seems fast, but I most likely had it since I was young. Since then I’ve had periods of ups and downs, like most people w lupus. For me, lupus affects my blood. I have dealt with strokes, and blood clots, and two brain aneurysms. I also live with more common symptoms like daily fevers, pain, fatigue, and hair loss.
Now that I have lived with it for so long, it doesn’t seem completely overwhelming to me as it did in the beginning. I’ve finally figured out what my lupus flare triggers are (in most cases) and I take better care of myself – resting when I need to, not overloading my schedule, and saying ‘no’ when I need to. Lupus has also taught me a lot about myself in terms of realizing I am more resilient than I ever thought. It has also helped me become more patient and compassionate towards people, and this experience made me realize that we don’t know the difficulties someone is experiencing or the hardships they have faced just by looking at them.
What have been your biggest challenges and how have you overcome them?
Lupus can present challenges in all areas of one’s life. During severe flares, there can be challenges in just caring for ourselves like taking a shower, or preparing food. For someone who is healthy, it may sound strange that just taking a shower and getting dressed can be such an overwhelmingly exhausting and painful experience, that we can’t do anything else for the remainder of the day.
In more broad terms, lupus has definitely caused challenges in my career. It is almost impossible for me to work in a fulltime role as a journalist because news is a fast-paced field and running from story to story is difficult when you have lupus. Luckily, I’ve worked in journalism long enough now that I can freelance as my health allows and that has been a huge blessing.
A challenge I faced 18 years ago when I was first diagnosed was the loneliness and not knowing anyone else in my town with the disease. Social media didn’t exist but blogs were just beginning. So, I started my LupusChick blog as a way for people with lupus around the world to connect. Today, we are a NY based nonprofit, we reach around 400K people a month, and we have a heavy focus on helping men and women educate themselves or learn a trade that will help them financially care for themselves while managing the disease. As I learned with my own journey, sometimes we have to change careers or tweak it because of the illness. Since 2015, we have given away seven education enrichment scholarships for people with lupus in school.
How do you keep a positive outlook on life?
It’s no secret that any chronic illness can wreak havoc on our thoughts and emotions. A lot of this has to do with the fact that we deal with the illness every day, we feel it everyday, and we have no idea what “surprise” lupus will give us each day. We literally never get a break.
When flares happen or I am in a rough season, I really try to focus on my wins. I remind myself that I’ve been through strokes, getting hit by the truck, and overcame a severe flare that put me in a wheelchair for a year, and I’ve overcome them all. Those experiences have helped me appreciate how lucky I am to just be alive, and remind me that my purpose here isn’t finished yet – there is still a lot of work to do.
How does diet play a role in fighting this disease?
This question made me chuckle because I spoke about diet and lupus a decade ago and people looked at me like I had 10 heads, especially my medical team. Today, thankfully, things are changing.
Diet plays a major role in my life, and I think my health/food journalism background helped me in figuring out what works for my body, along with seeing different nutritionists over the years. While I don’t feel there is one specific diet for a lupus patient, because we all deal with different symptoms and overlap diseases, I do believe eating clean, focusing on anti-inflammatory foods, and limiting fast food, processed foods, and sugar, has helped me immensely. When I stick with lean meats, healthy fats, a lot of fresh vegetables and fruits, utilize fresh ginger, turmeric, and aloe vera in my diet, and stay on top of my supplements I get from a functional medicine doctor, I see a dramatic difference in my energy and stamina, and experience less fevers and pain.
If someone is just starting to determine how diet plays a role, I would suggest they keep an ongoing food journal. I journaled for years and saw strong correlations and trends in my symptoms depending on what I ate/drank – this helped me tweak my diet.
How would you like to see more people get involved?
I love that in today’s digital and social media world, more and more people are not only sharing their stories, but their photos and videos of the “hard” stuff – our IV treatments, our hospital stays, our struggles, etc. Years ago there wasn’t this type of awareness and today, it is helping to educate others. I would just encourage people to continue doing this. And for those who are afraid of taking that first step, to tell them it is so freeing to share your truth while bringing hope to others. I would also encourage friends, family members, and caregivers to share their side of the story, attend lupus walks, go to a support group meeting, or volunteer at their local lupus organization. In today’s day and age, there is literally something for everyone when it comes to ways of spreading awareness for Lupus!
Marisa is the author of Lupus: Real Life, Real Patients, Real Talk and travels around the U.S. speaking on the topic of autoimmune disease on a regular basis. In her free time, she is an avid baker with a love for food photography and styling. Currently finishing her memoir, Marisa resides in New York with her husband, mom, and rescued terrier, Bogey. Read more about Marisa on the LupusChick website or follow her on Instagram and Facebook.
You can also donate or find additional resources on Lupus at the National Resource Center on Lupus.
Go PURPLE to END Lupus!