The Lupus Warrior
Imagine having a disease so disabling that they call you a warrior for living with it. Research has shown that 1 in 250 estimated black women will develop lupus. I am part of that 1 in 250. My life with systemic lupus erythematosus (SLE) has been unimaginable. I have had to make many adjustments and need constant accommodations. Somehow, I have managed to find peace with my diagnosis and great passion for advocacy.
I was chronically ill for 2 years before I got a proper diagnosis of my autoimmune disease. In 2021, I was experiencing a lack of blood flow along with a tingling sensation in my fingers. One evening, I was at home spending time with family and working on some edits for my photography business when I noticed my fingers stiffening. I paused to look at my hands and began to panic when I saw how pasty white and numb they were. At the time the rest of my body felt okay so I didn’t feel the need to go to the ER. I sent a picture to my primary care physician and she immediately referred me to a rheumatologist. Rheumatologists are doctors who specialize in autoimmune diseases.
A few days later, I went to see the rheumatologist and they diagnosed me with Raynaud’s syndrome - A condition in which some areas of the body feel numb and cool in certain circumstances. The doctor ordered some labs just to confirm the diagnosis and see if it was potentially related to any autoimmune diseases. At the time, I didn’t even know what that meant. No one explained it to me or gave me any warning signs.
A week later, I received a phone call about my lab results. I got a weak positive result that insisted I may have lupus but there was only 1 ANA antibody which meant the changes were low. My doctor assured me that it was nothing to worry about since I had no other present symptoms. That left me with the assumption that I was okay and only dealing with something mild. I went along with living like a normal 21 year old. Exploring cocktails at bars with my friends and eating whatever I want.
I gaslit myself about some of the warning signs my body was giving me. At first I diagnosed myself with low iron like most women do.The fatigue, headaches, and back pain that I had would no longer go away after popping an Advil. My body was trying to communicate with me but I wasn’t listening. I was always in flight or fight mode and had a fear of missing out. I was being told to slow down, to breathe, and to not worry about things no longer in my control. I harbored negative energy filled with resentment and repressed anger from my childhood. I normalized having anxiety and depression because I thought that’s all life had to offer me. I rolled with the punches and in 2023 I was knocked out.
Lupus has taught me valuable lessons about our common human tendencies. We often fail to slow down and take necessary breaks. We ignore our intuition and neglect to listen to our bodies. This disregard disrupts our gut-brain axis, leading to physical pain and discomfort. Our minds are trash cans filled with trash we never take out. We get trapped in the cycle of toxicity. We never forgive, we never forget.
While I spend most of my days in agony trying to disassociate from my reality, spreading awareness is the only thing that keeps me going. If you haven't woken up to who you want to be I encourage you to look at yourself in the mirror and say something kind. Look at your hands and feet... or your beautiful hair. Your radiating skin. Are you in a home? Are you safe? Express gratitude for the simple fact that you are alive and are receiving this message.
I have decided to become a health coach and took it upon myself to get a certification from the Harvard Medical Health & Wellness program. l will be offering one-on-one coaching services, group coaching services for businesses, and will continue to advocate and spread awareness for lupus.
I am extending my deepest gratitude to anyone who read this entire post. It means the world to me to have so much support on this new life path.
Sincerely,
Moon Wurie, a lupus warrior