Being A Man With Lupus: Dion's Story
Updated: Aug 2
In 2010 I was diagnosed with systemic lupus. For 3 years I struggled with having it and didn’t share it with anyone. I wasn’t mentally prepared to face any of the things that we as men feel can result in our masculinity being questioned, (how did he end up with a women' disease?) I didn’t want to be seen as weak or less than a man; because one of the biggest misconceptions about lupus is that it only affects women. When I was finally able to open up and share with my family about my diagnosis, the support I received was an eye-opening experience. I realized that there are so many people struggling the way I was and they too could be feeling like they are alone in this fight; so, it became my purpose to share as much lupus information as I possibly could. I wanted to help people have a better understanding of what lupus really is. I didn’t want to limit myself to just my community, so with some deep prayer and motivation, I decided to use something that I love, my career as a professional drummer, as a national platform to promote something that I have always been passionate about.
Before being diagnosed with lupus, I watched both my mother and grandmother deal with complications from lupus, so I have always been passionate about supporting lupus because of the impact it had on my family. I’ve seen multiple aspects of lupus; with my grandmother’s lupus going into complete remission, to my mother succumbing to her battle with lupus; however, even after watching them go through their individual battles with lupus, nothing prepared me physically, mentally, or emotionally for my own diagnosis of Lupus.
In early 2018 time frame ( 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. Because I am a drummer who travels, I was able to connect with so many different people from all over the world and I figured why not share 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. I wanted to create a 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.
As I kept pressing forward each day while touring and playing with different bands around the country, I noticed people began inquiring about where they could purchase the #BeatLupus t-shirts, hoodies, and wristbands because I always wear my #BeatLupus gear when I perform on stage. As time went on I noticed I was receiving a lot of emails and posts on how people could purchase shirts. I did my research and formed my own company called #BeatLupus Apparel. My goal was to create a product that men and woman would feel comfortable wearing and as men it was hard for me at first to sometimes wear a shirt that just had a purple ribbon on it (because as man we want to feel masculine), so that’s why I created a logo that men and women could wear when representing lupus. And that’s my reason for having the design I have on my #BeatLupus merchandise.
My goal for # BeatLupus is to inform not just the people who battle this disease but to also educate the families and loved ones as well, to help them have a better understanding. A huge misconception of lupus is that because we “look well” on the outside that we're okay: but no one can feel the pain that we are dealing with on the inside. I want to help them understand that though we can sometimes verbally express what we are feeling that there are some things outside of having lupus you can never fully understand, particularly, the obstacles we face on a daily basis. We want to build a stronger family support system within the lupus community by educating and equipping them with as much lupus knowledge as possible. A strong support system is very beneficial to the overall health and quality of life for the person living with lupus, so we are currently working hand in hand with a team of therapists to create a weekly support group for lupus patients and their families.
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. 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!!"
*This article was authored by a lupus patient using his personal experience; the words and opinions belong solely to him.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.