Today we raise our fists high and put our hands together in celebration of our Feature Girl Warrior, the passionate advocate bringing awareness to the chronic disease of LUPUS and to Mental illness, Shakita Jones, who has lived with both diseases, Lupus for six years and Mental illness as a young adult. She established herself as an advocate and public speaker in 2014, giving a speech to help raise money for a young girl who had no insurance, and the importance of awareness. Shakita has given motivational presentations with different San Diego county organizations and is also a residential leader participating in community brainstorming meetings to bring about real changes in the community regarding important issues like health disparities, Lupus and Mental Illness, the lack of knowledge and awareness in her community that has a large population of people of color as Lupus attacks women of color more so than white women. She has been featured in two news articles, Voice and Viewpoint and the Union Tribune that reported on her mission as an advocate and the lack of concern about LUPUS in the medical field. Shakita also has sat on many boards to bring awareness to Lupus including The Lupus Foundation of Southern California, as well as, her own organization, Lupus Warriors United 2016 on Facebook and the Lupus for Black Women Facebook Group, a supportive place for women of African descent to express themselves and share their stories. Currently, Shakita serves on the board of the NAACP Health Committee. She also has a documentary on YouTube called Living with LUPUS, where you can hear her powerful story.
What makes you a Girl Warrior?
I am a Girl Warrior because of the many ways I chose to live my life. I truly believe that life is about perspectives. Even though I have Lupus I chose to live in healing. I speak healing. I talk as if I am already healed. This does not change even when I’m sick or in pain. I live for the day. I take every opportunity that may present itself to share my story about living with Lupus but not in the pain of it. For I truly believe that we do not have to live in the pain of life or lupus. Lastly, life is about choices. I chose to keep getting up even at my sickest. I was not going to wave the white flag. My doctors gave me no hope but my faith in Christ would not allow me to accept defeat. Faith, hope and trust are a powerful weapon against anything life can throw my way. I know this to be factual. It changes the course of anything. These traits are what define me as a Girl Warrior. I believe.
You were diagnosed with LUPUS six years ago. What was your immediate reaction upon receiving that devastating news?
My immediate reaction to be being diagnosed with Lupus was two-fold. I was happy that one, I wasn’t crazy, and two, after all these years I finally had a name to my many health problems. My next action was fear, extreme fear. I didn’t know anything about Lupus but that my biological aunt died from it. I was angry at life and God. How could God allow me to get sick? Didn’t he know my kids needed me? Who would be there for my daughter, whose father had committed suicide? I was so angry with him, thinking that in the end, I would die from Lupus; how could he love me and allow this? I was sick and I felt so hopeless. I felt this way for about the first two years or so. I just knew that any day I would die like my aunt. My days became long and dreadful.
What do we need to know “for sure” about LUPUS?
People with Lupus are not pretending to be sick. And the worse thing you can say to someone with Lupus is, “but you look okay.” Most people with a chronic illness pretend to be okay for their loved ones. Ninety percent of Lupus sufferers are women and ten percent are men. Everyone should know that Lupus affects women of color more than white women, especially women of African descent. Lupus is called “the great imitator” because the symptoms often mimic those of some heart, lung, muscle and bone diseases, as well as, blood disorders, diabetes, thyroid problems, Lyme disease, fibromyalgia, and rheumatoid arthritis. Sometimes it comes in the form of a high fever, rash and the feeling that you have the worst case of the flu. Lupus is unpredictable. It affects women in their childbearing days. Lupus can affect any organ of the body that includes the skin, kidney, brain, nerves and blood. No two people have the same symptoms so it’s difficult for doctors to diagnose. Sadly many doctors don’t even know how to recognize the symptoms.
How did it change your life?
My life changed in many ways. I’m allergic to the sun now. I can’t be in the sun without getting burnt. I use to bathe in the sun, now I avoid it. The sun can trigger a flare-up so I’m very careful. I also can’t be under fluorescent lights without feeling totally drained. I have to remember to cover up in the sun. And yet I can’t get too cold or my body becomes stiff and painful. So I’m always trying to balance my life. This is very challenging and frustrating. People stare at me in the summertime because I am covered up. They say things like, “aren’t you hot?” Or they will say, “are you really that cold – why do you have gloves on?” I usually say, “I’m wrapped up and have gloves on because I have a disease called Lupus. Have you heard of it?”
What did you learn from navigating your way through the medical system?
One of the first things I learned about navigating through the medical system is the importance of having self-confidence. I knew my body better then any doctor. I had every right to ask questions. An informed patient is better than a dead patient. I wasn’t willing to take some medications because of my own research. So as a patient I decided on what medications I wanted to take. I respected my doctors but I know my body. I discovered that there are three kinds of doctors. The first kind is a doctor who is “a textbook”; he can’t think outside of what he learned in school. The second kind is a doctor who doesn’t go beyond the 15 minutes insurance allows. They don’t listen. In fact, they are annoyed and it usually made me feel like I did something wrong by asking too many question. This kind of doctor is opinionated and makes the patient feel small. The last kind appreciates an informed patient. They treat you like their equal. You’re both on the same team. And doctors like this allowed me to cry and share my frustration. I left their office feeling empowered. Also it is very important to bring someone with you (if you can) to your appointments. They are your second eyes and ears. Sometimes, you will be told that your doctor can’t prescribe certain medications, but that isn’t necessarily true. My doctor had to go into greater detail to justify his reasoning for a different, or more expensive, medication. In San Diego it’s called a prior authorization. Lastly, many people feel like they don’t have a voice. You have a voice. You are your best advocate. You’re a powerful human being.
What effect has LUPUS had on your family, especially your children?
It was too painful for my daughter to accept. She wouldn’t read about it. She didn’t want to talk about. She refused to accept that her mother could be so sick so she stayed away from me for many years. She lost her father to suicide, and now she was losing her mom to lupus, so she ran from everything and everyone. My oldest son had to bare the weight of seeing me sick, I couldn’t hide the pain. He would often come into my room late at night crying uncontrollably. I always told him, “Shawn trust God.” He is God in my good times and my bad times. My youngest son really taught me what having faith like a child meant. Many times I wanted to give up but his diligent prayer was the same no matter how sick I was. He trusted God to heal his mom. His faith never wavered. I had one friend who really stuck by me. He was a “no matter what” friend. He sat with me at the hospitals and went to every appointment. Many times he was my voice of reason when I wanted to stop seeing my doctors and throw away every medication I had. On top of all this, my family could no longer be active. My youngest son had to stop hockey because it was too cold for me to take him, and usually too weak to drive. There was no more field trips or volunteering in his class. There were no more trips to the beach playing in the waves with my children. I couldn’t go to my oldest son’s auditions or his competitions. My life was all about just trying to be brave so they wouldn’t worry. I was robbed of about four years of my kids’ life. I was robbed of finishing college. I was robbed of my freedoms that normal people took for granted. I tried to not be bitter or envious. I remember watching ants on my windowsill thinking even ants can go where they want. In frustration, I would say to myself, even stupid ants are stronger than me! I would turn over and cry. I just felt hopeless in those moments. I just wanted to alone – like how I felt… I didn’t know anyone else with Lupus. Who could I talk to? God? I didn’t even want to talk to him. So I isolated myself many times.
What has been your biggest challenge?
My biggest challenge has been in the Emergency Room. I hate going there. I feel like I have to beg for pain medication. In fact, I do. So many times doctors have judged me and questioned me when I ask for pain meds. Because Lupus is an invisible disease, I know this is one reason, but I also feel that it’s because of the color of my skin. I had one doctor tell me that my pain was not worse than someone with a broken leg.
What would you say to your younger Girl Warrior?
This question makes me smile because I have grown so much. I would tell my younger self to trust God and trust herself. I would look right at her and wave my hand and say… girl everything’s already all right right now. Trust the process. I would tell her that this would be one of her greatest challenges and one of her greatest passions. I would tell her she is one of the bravest people I know. She will one day be so passionate about Lupus that she would be brave enough to stand in front of any one and passionately advocate on the behalf of her warrior sisters and brothers. And most importantly I would remind her that: Our journey is never our own. That’s the most important message I would tell her.
What would you say to future Girl Warriors looking for inspiration?
I would tell future Girl Warriors that everything she needs to be is already inside of her. Whatever she wants she just has to walk in it until it becomes her. If she wants inspiration than be inspirational, a little bit every day, until one day before she knows it she is inspiring others. If she wants to be brave… then every day put on bravery like clothing. Every opportunity there is to be brave take that moment and make it yours. Then one day before you know it, you’re brave.
Who is/are your Girl Warrior hero(s) and why?
I would say my Girl Warrior heroes are all the women in my life who faced so many challenges that the average person would had given up on. Women who turned their lives around after addiction, and during addiction, who now are clean. Women who bravely left domestic violence relationships even with the threat of death and the presence of it. It was very difficult but by God’s grace they are now safe. Other women with illnesses, on their deathbed overcoming obstacles, these are the unsung heroes. And lastly, I admire myself as a hero, not in a conceited way but I appreciate and value myself now. I love the woman I have become. Lupus gave me the opportunity to see my life through eyes of compassion for others like myself. Before, I too hurried along taking every step and inch of my life for granted. With Lupus I had to slow down and actually take the time and smell the flowers. Everything becomes priceless and precious. The homeless lady is my hero. The panhandlers are my heroes. The shut-in. The sick and near death are my heroes. These are my heroes.
What’s next?
To be honest I feel that I am limitless. I see myself one day doing a TED talk. I see my story touching the lives of countless people in places I never heard of. One day soon, I hope to travel and see the world and share with future doctors and nurses how patients living with Lupus feel. I have my online support groups for people with Lupus and those who support us. I want to finish the books I have started. I want to make my organization into a non-profit and help people navigate through the medical system. My hope is that one day Lupus will be a part of everybody’s health check-up.
Where do you see yourself in 5 years?
In the next 5 years I hope I have completed college and have become a famous motivational speaker. I want to model and travel. I want to take lots of pictures and meet people I have never heard of. I want to go to far away places. I want these next 5 years, and the rest of my life, to be my best life. Everything that I was robbed of, I want back, doubled.
If a movie were made of your life, what would it be called?
When God is in it, there is no limit. It’s not over.
You can learn more about Shakita here: https://www.youtube.com/watch?v=9Egf4xZCTYo&feature=youtu.be
Read about her story in the Voice & Viewpoint: http://sdvoice.info/local-woman-finds-joy-during-life-with-lupus/
Connect with her on LinkedIn at: https://www.linkedin.com/in/shakita-jones-14b374105/
Follow her on Twitter at: https://twitter.com/Kiki4curelupus
On Facebook at: https://www.facebook.com/shakita.jones?lst=580696643%3A100000452314182%3A1520794789
By email at: shakitashontajones@gmail.com
You can learn more about Lupus at the Lupus Foundation of Southern California at: http://www.lupussandiego.com/
Here’s the ultimate guide on Lupus by Jeri Jewett-Tennant, MPH (medically reviewed by board-certified physicians): https://www.verywellhealth.com/what-is-lupus-2249968
Thank you to the talented photographer, James Moore for providing all the gorgeous photos of Shakita for our interview.
