#LupusAwareness - What Living With Lupus Looks and Feels Like


The symptoms started for me around 17/18 years old. It was my senior year in high school and I noticed my finger tips would either turn pale white or a purple/blue color. Going to the doctor and getting blood work done, I found that I had a condition called Reynolds Syndrome. This disease causes your fingers and toes to feel numb and cold in response to cold temperatures or stress. From there, my doctor recommended I go to a rheumatologist. I had more blood work done when visiting the rheumatologist and everything else came up fine. The doctor stated that this could potentially be a sign for Lupus, but many just deal with Reynolds with no other issues. Fast forward to 2011, about 8 years later, I finally moved to New York and shortly after, I started to become very ill. I would have fever like symptoms, bad shakes and then start sweating profusely. I probably lost about 10lbs or more in a matter of a 2-week span and lost almost all my hair. Knowing something was wrong, I decided to go home (New Jersey) where I would revisit my rheumatologist (who I still visit to this day) and she would utter the words I was so scared to hear, "You tested positive for Lupus."

Lupus affects everyone differently. People with lupus have unusual antibodies in their blood that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. In other words, your body is attacking itself. The type of Lupus I carry is systemic (SLE) and discoid (DLE), which mainly attacks my skin. If in a flare up, red patchy blotches appear on my body, mainly my arms, back, and upper thighs. There are times when I could have a red rash around the bridge of my nose and cheeks, commonly known as the butterfly rash. Sometimes, when these rashes settle, they can leave deep rooted dark scars. Upon seeing me, you might notice darker pigmentation on my nose. This is from the discoid so, no I don’t have something on my nose to wipe off. One way I get rid of the flare up’s is by taking a steroid called prednisone. This medication makes my weight fluctuate and could potentially affect other areas in my body.

Outside of the skin flare up’s, I deal with being extremely tired at times. My hands and feet become swollen and I experience joint pains, especially when physical activity increases. One of the major things that I still have a hard time accepting is not being able to be in the sun for long periods of time. If I am, I must constantly apply sunscreen, but let’s be honest, everyone should be applying sunscreen! Unfortunately, the sun and stress are the main triggers of my flare ups.

The good news is, I have learned with this experience not to stress the small stuff or stress out, period! Mainly because life is too short. Why worry about the things you can't control? Such as Lupus. God knew my story before I was born, and knew I was strong enough to handle this! I am a God-fearing woman and my faith runs deep within my soul, but I would be lying if I said I never worry about the future. I get so frustrated in questioning if I should take a trip or not because I’m afraid of a flare up. However, I still live my life. I’m just more diligent of the activities I partake in. I have become extremely self-aware and learned how to listen to my body in what it needs or doesn't need at the time.

I could go on and on how with how this mysterious disease affects me. There’s a bigger issue at hand: how can we all help? It would be amazing if one day we can say there's a cure for Lupus and the future generations have one less thing to worry about. I am a firm believer that we are all put on this earth for a greater purpose than ourselves and by contributing to finding a cure, we are making a difference in helping eliminate this mysterious disease.

I am currently going through training to be a Lupus advocate with the Lupus Foundation of America. I encourage anyone who wants to help those who live with this condition, to donate because every little bit will help.


Sophia Benson is a Philadelphia born, South New Jersey native, who currently lives in New York City. She graduated from Temple University with a BA in Telecommunications & Mass Media and a minor in African American studies. Being a free spirit humanitarian, she loves to travel and see the world with her family and friends. She is a God-fearing woman who lives by faith and not sight while knowing all things are possible through Christ. In her spare time, she likes to watch Martin re-runs and go to brunch with her girls.

To keep up with Sophia and her life journey, she can be followed on Instagram.



The month of May covers Lupus Awareness. Lupus is a chronic autoimmune disease that's rarely easy to diagnose, extremely challenging to treat and live with, and currently has no cure. We are encouraging people to gain a better understanding of this illness so we're accepting submissions/pitches from people who have it, and those who have family members/friends who've had it or currently living with it. True understanding opens the door for compassion and empathy and with any chronic illness, this is always necessary. This is what we hope to achieve with your stories.

May is also Mental Health Month. We already devote every Monday to mental health so of course we're going to acknowledge and highlight post for this throughout the month.  As a country, we focus a lot on our physical appearance, leaving our mental health to fend for itself. However, there are some people who take it very seriously and maintain their mental health on a daily. We're interested in hearing what your support groups and selfcare look like, what your battles involve, and how we can all be more empathetic towards those living with mental illness. 

Please send all pitches/submissions to submissions@theextraordinarynegroes.com by May 23, 2018.

We look forward to hearing from you!