The Power of Connection: Living with CLE

Naomi, a mom, content creator, and a public speaker, shares her experience since being diagnosed with cutaneous lupus erythematosus (CLE), a serious chronic autoimmune skin disease. The start of her journey began online. Someone had commented on her video that she had symptoms similar to lupus. Once she received her diagnosis, Naomi faced a multitude of challenges regarding health, appearances, motherhood, and her daily life. After connecting with others in the lupus community, she remained resilient and determined to adapt her lifestyle and continue doing what she loved: creating content and taking care of her son. Watch Naomi's story below.

TRANSCRIPT: 

My audience are actually the ones who initiated me to go get diagnosed. When I shared a hair video on YouTube, my comments were questioning the raised lesion right in the middle of my forehead and balding on my scalp because it could be lupus. This was the first time I've ever seen any signs of this, so I knew it was abnormal. So, they initiated it, and it's like we're going along this journey together pretty much. 

My name is Naomi. I'm a mom. I'm a content creator, lupus advocate and public speaker. And yes, I have lupus. Cutaneous lupus. It affects my skin, my system, and my organs and tissues are attacking itself. But it shows up on my skin the most. I'm just left with huge bald spots, which then affect hairstyles that I'm used to getting. I have to wear sunscreen every day having cutaneous lupus. Everything felt like a domino effect on top of still processing the diagnosis. I did struggle a lot in the beginning with trying to show up as a parent. It's kind of hard to explain to a now 6-year-old. He was even younger back then. You kind of have to learn the language and speak to your child from their lens so that they understand it. I've had to make huge adjustments to be able to provide for my child to the fullest capability, you know, is a challenge. And I'm so blessed to work from home and also do my content creation. But I created that lifestyle. It wasn't always like that.  

Living with cutaneous lupus has taught me resilience. Some days I'll have hope and some days it is hard to have hope. At the end of the day, I do have this diagnosis. There's a way to navigate this. You can do it in a positive light; you just never know how your story can affect other people. When it comes to social media and me sharing my experience, I quickly realized it has everything to do with the community and with other lupus patients because these are real people with real experiences that can actually relate and it just makes me happy to connect and find community within that life shifts and I give myself credit for not focusing on the negative. I love capturing moments in my life and I just wake up every day feeling so blessed to have those experiences. That is what keeps me going. To know that your experience will be something that's worth it in the end. So don't give up on yourself.