"I have Lupus it does NOT HAVE ME"| Nefertiti's Story

Updated: Jul 31, 2019

As of recently I have been reaching out to others with chronic conditions that have altered their appearance and/or transformed their lives in various ways. The intention of this is to create an open dialogue about these conditions, some of which are often overlooked or forgotten about. Repeatedly people such as myself and millions of others suffering from these underdiscussed illnesses can feel isolated -which is what I am aiming to to change. By reaching out and sharing the stories of people suffering from chronic conditions we can raise awareness, help others who have just been diagnosed see how someone with the same conditon has coped all the while creating a possitive space and supportive network.

I came across the Instagram account neffnjoilife at the beginning of February. She regularly posts some of the most beautiful inspirtational and strength quotes I have seen. She also posts pictures showing her scars; a result of her fight and survival with Lupus. I had a feeling that Nefertiti's story would be one of courage and strength through her illness so I reached out to her and requested that she would share her story here on Skindeeply. She so graciously agreed (thank you!) . I respoded by sending a questionaire of sorts (almost akin to an online interview). Below is the dialogue of said "interview":

Nefertiti's Story | Skindeeply

Tell us about yourself! What is your story? What do you? What do you enjoy? What defines your badass self?

"I am an amazing brave strong woman who’s been through hell and back dealing with Lupus since 1996. I was diagnosed while pregnant with my first child and a senior in college at Grambling State University. I was determined that nothing was going to stop me from graduating with my BS in Accounting. With the support of my mother we both decided that we’ll get through this together. My motto is: Yes, I may have Lupus but Lupus doesn’t have me! I live my life and deal with Lupus as it comes."

What is the name of your condition? How long you have had it? What does it do to your body physically? How did you feel when you first got it? and how has it impacted your life?

"I was diagnosed with Discoid Lupus (totally skin related only) in 1996. No issues other than fatigue from prolonged sun exposure and a few scars on my face, nothing too serious at that time.

I ended up having my first child, Christin, in September of 1996. I was advised not to have anymore children because of having Lupus but we (myself and fiancée at the time) wanted one more. We ended up getting married in 1999 and I had my second son Aris in June 2000. He was born without any issues as well.

It wasn’t until 2010 that my health took a turn for the worst! The left side of my face swelled and I didn’t know why so I went to ER and I was told the Lupus has made its way internally therefore I was diagnosed with SLE that had started to attack my kidneys which led to sepsis (a severe kidney infection). During this period I started to feel very bad; always in constant pain, very fatigued and just awful."