Hey, Ambitious Fam! May is Lupus Awareness Month and this year I am commemorating it by uplifting the voices of those impacted by the illness. Lupus is a chronic autoimmune disease that can affect many different parts of the body, thus creating a unique experience for those impacted by the disease. Systemic Lupus Erythematosus (SLE) is said to be the most common form of the disease and women (primarily women of color) have higher diagnosis rates. In fact, it is estimated that 9 in 10 people who are diagnosed with lupus are women. While there are treatments to help manage the myriad of symptoms associated with the chronic illness, there is currently no cure for lupus.
Last week, Caitlin and I had the opportunity to share our podcast interview with Barbara Alexander about her lupus journey. Ms. Barbara, who was diagnosed with lupus in 2016 (but has been impacted by the disease for much longer) is a family friend with a heart of GOLD. I have learned so much about lupus thanks to her efforts to spread awareness, and I am so grateful that she agreed to share about her journey on Virtually Best Friends Pod. If you haven’t gotten the chance to listen to the episode yet, I recommend giving it a listen! Ms. Barbara’s storytelling truly highlighted how convoluted the road to diagnosis and life with lupus can be while sharing pearls of wisdom along the way.
In honor of World Lupus Day (today–May 10th), I teamed up with a couple of Lupus Warriors to help #makelupusvisible with a written interview. In addition to Ms. Barbara, this interview also contains the perspective of Dion Langley who was diagnosed with SLE 12 years ago. Mr. Dion is a musician who used his passion for drumming to “give lupus an identity.” Check out this video for more on how Mr. Dion is using his gifts to “BEAT LUPUS.”
I asked Barbara Alexander (BA) and Dion Langley (DL) a few questions for their perspective of life with lupus:
How does Lupus impact your day-to-day life?
BA: Every day is different. That’s the thing that makes Lupus such an insidious disease. One day I can be feeling like 100 bucks, the next day I could need to be hospitalized. You never know what kind of day you’re going to have.
DL: After being diagnosed with SLE, I tried my best to continue working and doing things for my family but my health just wouldn’t let me. I was taking all types of medications and being in and out of the hospital for periods at a time. It really took a toll on me, drastically. I realized that I would never be able to be the same person as before. I suffer from chronic pain in my chest and heart area and I can’t count how many times I’ve been to the ER since 2012 dealing with this issue. It has affected my joints, skin and circulatory system very badly. Also, being a drummer, it takes a toll on my body because I find myself struggling trying to keep myself energized throughout the concerts. Nowadays I have to pace myself so I wont get tired as fast.
Many nights I can’t sleep. Then there are times where I just slept all day and night because I felt so tired and drained, only to get up and feel like I haven’t slept in 3 or 4 days. My body constantly stays sore in the shoulder, lower back and chest area. So each day is a struggle and I am working hard trying to stay healthy as well as staying motivated during this journey.
I suffer repeatedly from shortness of breath and I haven’t been able to be active with my kids like I was before being diagnosed with lupus. I suffer badly from constant chest pain and an unexplained rapid or irregular heartbeat due to inflammation around the heart. Overtime, I also developed Pericarditis as a side effect of me being diagnosed with lupus. Living with lupus as a professional drummer isn’t easy, it’s hard on my body and muscles but I refuse to let lupus defeat me.
What’s a common misconception about Lupus?
BA: A common misconception about Lupus is that people are exhausted because they don’t look sick.
DL: The misconception about lupus is that it’s a woman’s disease and a lot of people don’t know that men have lupus as well. 10 percent of lupus patients are male and 90 percent are women. But I believe that it’s more than 10 percent but men don’t speak up about having lupus so the statistics don’t show
What are some resources that have helped you on your Lupus Journey?
BA: Having a therapist. Joining Lupus support groups and reading all the information that I can. Some information is helpful and some is not. I just hold on to what works for me.
DL: When I got diagnosed in 2010, I reached out to some local lupus organizations and I never got a response back so I took the initiative to do my own research and learn about lupus on my own. I was blessed to have a strong support system at the time, which included my kids and my uncle.
What is one thing that you wish others knew about living with chronic illness?
BA: I wish people knew how hard it is. I wish people were much more kind and understanding. If I can’t do something I can’t do it. I have to look out for myself and put myself first at all times.
DL: You look fine on the outside but your body is fighting an internal battle that no one can see each day.
Do you have any advice for others that have recently been diagnosed with Lupus?
BA: The advice would be to take every day one day at a time. Yesterday doesn’t matter and tomorrow is in here yet just deal with the present.
DL: Understand you have to learn your body and be mentally strong to deal with lupus. Understand that you can’t beat lupus physically so you have to learn to beat lupus mentally.
Is there anything else you would like to share about your Lupus Journey?
BA: Having lupus is not for the weak!!!!!!
DL: In the early 2018 timeframe (shortly after my Lupus surgery), I initially began wearing the #BeatLupus t-shirts first as motivation to myself and posting pictures on my social media pages as encouragement to all living with Lupus–especially men with Lupus–and instantly started receiving so much positive feedback for opening up about my challenges with Lupus. I was able to connect with so many different people from all over because being a drummer allows me to travel to various places throughout the world. I figured why not invest in something positive with this platform and make a positive impact on others. Since I’m a drummer and I beat drums, I just came up with the slogan #BeatLupus because it really fits who I am as a drummer and lupus warrior. So I wanted to create and name that people could relate to when they see me in my merchandise. With that in mind, I then formed #BeatLupus Brand and #BeatLupus organization as my way of giving back to others who suffer from this deadly disease.
Being a Lupus Advocate and dedicated to the overall cause, I’ve done several events in my hometown to help educate, promote and fundraise for Lupus awareness. #BeatLupus have been invited to participate in various community events in the near future and we’re hosting a Lupus Awareness weekend this year, open to the public. I know that my efforts have already made a positive impact on a lot of lives because I read all my fan emails and it makes me feel so good that I’m able to help others and give back. I’m very blessed and humbled and I take this position very seriously. Before I was diagnosed with Lupus my goal was to be the best drummer in the world, but God had a different plan for me. I’m far from the best drummer in the world but I’m still blessed to be able to do what I love and it’s playing the drums. So as I always tell people “I’M DRUMMING TO A DIFFERENT BEAT” and that’s to BEAT LUPUS!!
Thank you so much, Barbara and Dion, for sharing some of your lupus journey in this space. If you would like to learn more about Dion’s #BEATLUPUS Apparel, check out their Instagram!
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