For Arthritis and Lupus Awareness Month, we sat down with Anniece Robinson, M.S., Ph.D., a Lupus warrior and advocate, and her son, Celebrity Chef Desmond Robinson (@chef_darthur), to discuss their shared journey. In this moving interview, they speak candidly about how Lupus has shaped their lives, their relationship, and the power of family support.
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Photo courtesy of Anniece Robinson at Everbloom Farmacy, Memphis.
Can you describe a ‘piece’ of yourself that Lupus has challenged, and how you’ve worked to reclaim it?
Lupus has challenged me on many fronts—medical, mental, spiritual, and physical. For many years prior to the Lupus diagnosis, I had frequent doctor visits for many “itis”: arthritis, tendonitis, bursitis, unidentified acute body pain, all-over bruising, hives, acute dry eyes, exhausting fatigue, etc. Twice in 2010 and 2011 I was rushed to the ER in unbearable pain that made it difficult to sit, stand, or walk, leaving me curled in a fetal position. I had 4 to 6 day hospital stays, and each time I was misdiagnosed.
Lupus is often called an ‘invisible illness.’ What’s one misconception you’d like to dispel about living with it?
In one aspect, Lupus was invisible because the layers and overlapping symptoms—where the dots were not connected—caused misdiagnosis and impacted me receiving appropriate treatment. On the other hand, there was nothing invisible about the countless doctor visits, the extended hospital stays, the chronic pain, constant fatigue, and the mental anguish of not understanding what was happening to me.
How has your understanding of your own strength and resilience evolved since your diagnosis?
I must share the story of Shelia Thompson, one of the kindest souls and a dear childhood friend. She was the first person I knew to be stricken with Lupus when we were teens. In the 70s in the Black community, Lupus was unheard of. Her condition was so debilitating that in her last weeks the uncontainable high fever shut down several of her core organs. The inflammation caused swelling beyond recognition, and her mother chose a closed coffin. I cried my eyes out for days. But I remember drawing from her strength to get myself together because she asked me to sing at her funeral.
Naturally, when I was told I had Lupus, my thoughts flashed back in fear. I reflected on how strong she was under such great suffering. My condition has not been on her scale, but I’ve had my share. Early on, there was crying, but I soon dried my tears. Once Lupus had a name, we were able to identify resources and strategies to combat it. We made a group decision that Lupus would not overtake me and I would continue to live life on my terms. The love and support of my family has been the baseline for my lift. My husband became laser-focused and sought out the best doctors our little money could afford. He was all over the place looking for specialists. His passion led the Memphis Chapter of the Lupus Foundation to ask him to become board chair. He was very impactful during his tenure.
What advice would you give to other mothers who are navigating a Lupus diagnosis while raising a family?
Continue to love on your family as you always have. Communication is powerful—discuss the adjustments that may be needed. Pain can alter one’s personality if you let it. Give attention to the fruits of the spirit—Galatians 5—and walk in it. Appreciate, inform, and encourage your family. People who love each other want to help. Coach them through how they can help.
One year, before 7 a.m., I was alone in the kitchen cooking. I had an episode—my arms locked up, and I dropped a hot pot of deliciousness I was preparing. It splattered, I screamed, and everyone in the house came running. From that moment, we started a new tradition of group cooking. It became a favorite family activity. From that, Desmond learned my savory turkey recipe… and now his turkeys are ALMOST as good as mine (smile)! That bad situation turned into a beautiful tradition.
Photo courtesy of Everbloom Farmacy, Memphis.
Research is crucial for advancements in Lupus treatment. What role do you believe patient advocacy plays in driving that research forward?
Patient advocacy is crucial. We are the human side—the recipients of the science that seeks to heal. We are the voices that propel politicians to loosen purses and position policy to advance the cure.
During difficult times, what personal strategies have you found most effective for maintaining your mental and emotional well-being?
My spiritual center—my faith in God—has been my greatest asset. I pray, I meditate, I trust God and expect Him to move on my behalf. This has been my ethos since I was a child. It lifts me to keep moving on His promise: III John 2, “Beloved, I wish above all things that you will prosper and be in good health.” Call me crazy or whatever—I’m a believer. Positive thoughts, positive actions, positive outcomes.
How has your perspective on self-care changed since your diagnosis, and what does it mean to you now?
Self-care is very important—knowing my body, what it responds to and doesn’t; understanding my triggers and how to avoid them. I try to keep things in balance.
We have a wellness org, U Be A Better You (UBABY), Inc. (https://www.ubabyinc.com/). Desmond has helped advance our Deliciously Nutritious campaign with tasty low-carb options. I found the low-carb regimen helpful for pain management. Desmond has helped prepare my meals at times.
What are your hopes for the future of Lupus research and treatment?
There’s a promising study linking Lupus to T-cell abnormalities. A drug that blocks interferon showed promise in preventing the T-cell imbalance. This is hopeful, especially following the breakthrough in Sickle Cell. I BELIEVE!
How have you found ways to embrace the ‘pieces’ of yourself that have changed, and integrate them into your identity?
I’ve come to terms with my condition and have a realistic understanding of my strengths and weaknesses. I focus on my strengths. I don’t waste energy on things I can’t change—that’s self-defeating. But when I apply effort to what I can change, I see positive results.
What are some of the biggest challenges you’ve faced in advocating for yourself within the healthcare system, and what advice would you give to others?
Coordinated medical treatment is still a challenge versus multiple referrals. I don’t see a one-stop shop in the medical industry anytime soon. Thankfully, many challenges have lessened or I’ve adapted to my environment.
Photo courtesy of Chef Desmond Robinson at Everbloom Farmacy, Memphis.
As a son, how has witnessing your mother’s journey with Lupus impacted your perspective on life and your career?
My perspective on life changed dramatically. I realized my parents and I were aging, and that shifted our health and lifestyle choices. One of the best ways to change our lifestyle is through diet. I became intentional about what I cook for my loved ones and myself. Even in my career, I cook like a gourmet grandma—it’s not always the healthiest. Now I aim to include healthier components. I don’t want my life’s work to negatively impact my community.
Food often brings comfort and connection. How have you used your culinary skills to support your mother’s health and well-being during her Lupus journey?
I think one of my culinary skills is making comfort food elevated and healthy-ish. Offering recipes with a healthy spin on our favorite dishes has been impactful.
What’s one thing you’ve learned about Lupus that you wish more people understood?
I didn’t realize how Lupus impacts people in so many different ways. I’ve known a few people with Lupus, but their experiences were different from my mom’s. Realizing her journey, pain, and treatment were unique made me understand the vastness of Lupus.
How has your mother’s resilience inspired you in your own life and work?
Her resilience has reinforced my understanding of the strength I come from. I have her DNA, my father’s DNA, and the blood of so many resilient people running through me. It empowers me to navigate life’s ups and downs.
What role do you believe family support plays in helping someone manage a chronic illness like Lupus?
“It takes a village” isn’t just about raising children—it’s about showing up for loved ones. Family support is essential for navigating life, especially with chronic illness.
Beyond medical treatment, what non-medical aspects of care do you believe are essential for someone living with Lupus, and how have you contributed to those?
A healthy lifestyle is essential—with or without chronic illness. The healthier you are, the better your body can fight off illness. I’ve helped through healthy cooking and recipes, but my brother and his wife lead this for our family. As personal trainers, they model a disciplined, inspiring lifestyle.
Photo courtesy of Everbloom Farmacy, Memphis.
How has your understanding of the importance of medical research grown through your mother’s experience?
For years, she didn’t have a diagnosis. She was in and out of hospitals with no answers. I hated that. When we finally had a name, we could create a treatment plan. That came through research. My dad took the lead, becoming Board Chair for the Memphis Lupus Foundation, helping fund that research.
How has supporting your mother impacted your understanding of empathy and compassion?
You need a lot of empathy. Sometimes Mom’s at 100%, and suddenly she’s weak. Especially during events she loves, she’ll push herself too hard. I’ve learned to pick up the slack. Being aware is one of the greatest forms of compassion. Pay attention to your loved ones.
For those supporting a loved one with Lupus, what’s one piece of advice you’d offer?
Ask them what they need—don’t assume. You might mean well but actually be in the way. Also, just listen. Sometimes Mom needs to vent. Just being a listening ear matters.
How do you think sharing your family’s story through the ‘Pieces of Me’ campaign can contribute to broader awareness and support for those affected by Lupus?
Lupus has knocked on many families’ doors. I hope by sharing our story, we shed more light on it and show how it takes a village—and love—to navigate this experience.
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Conclusion
Anniece and Desmond Robinson’s story is a stirring reminder of how resilience, love, and family support can shine through even the most challenging of journeys. As part of the Pieces of Me campaign, their voices add to a chorus of advocates working to build awareness, advance research, and bring hope to those affected by Lupus.
Special Thanks
We thank Everbloom Farmacy (www.everbloomfarmacy.org) in Memphis, Tennessee, for generously providing the beautiful setting for this heartfelt photoshoot—your support helped bring “Spoonful of Love” to life.
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