Episode #28: Monique Gore-Massy
Monique Gore-Massy, known as "The LemonadeMaker", is a Motivational Speaker, Lupus Awareness/ Patient Advocate/ International Ambassador. Monique is a local and national legislative lupus advocate, organizational volunteer, program facilitator, panel and workshop moderator, presiding on local and international committees/ advisory boards; with an extensive focus on awareness, health disparities and socioeconomic impact, and lupus clinical research engagements in the diaspora. In 2010, Monique heard three words that changed the trajectory of her life, “You have Lupus.”
Shortly thereafter Monique was introduced to the Lupus Foundation of America (LFA) by way of the Walk End Lupus Now. She had yet to find her voice or her purpose, but God had a bigger plan, the LFA was the conduit. In 2018, the Lupus Foundation of America awarded Monique “National Advocate of the Year.” Monique is a wife, daughter, sister, best friend, pawrent to Mr Chip, and ribster of the most loving and supportive husband, Alvin.
Monique is a lupus survivor living purposefully. After she was diagnosed, there was one point in her treatment when she was taking 52 pills a day, plus receiving infusions and chemo. At the beginning of her journey, her debilitating symptoms diminished her sense of hope, tested her faith, and challenged her identity. On today’s episode, Monique and I talk about how her incredible support system helped lift her out of the darkest period of her condition. We also discuss navigating relationships and chronic illness, as Monique was only a few months away from her wedding when she was diagnosed with lupus, and she and her husband have been managing her condition together ever since. Finally, we discuss why — especially as a woman of color — she feels driven to use her voice and work for change as a lupus advocate.
“When I look back at the pictures, I just look at the person that was in so much pain and just really pushing through every single moment.”
Here are some of the things Monique and I chatted about:
Receiving a life-changing diagnosis about two-and-a-half months before her wedding
How lupus can target any organ, meaning that symptoms are different for each person
The one symptom she couldn’t ignore, despite being able able to write off others
How her treatment plan has changed to match both the outcomes and lifestyle she wants
Going from 52 pills a day to 12 — and why she couldn’t make decisions about medication lightly
The shame she felt around her diagnosis, and how it stopped her from asking for help
How lupus challenged her sense of identity and purpose, and the depression that followed
Why she credits her support system with making a huge impact in her life with lupus
Embracing the identity of “LemonadeMaker,” and how that journey began
The challenges of navigating chronic illness while in a marriage or relationship
Her advice for how couples can both find support, not just the individual with the condition
How lupus tested her faith and belief in God, but ultimately helped her to find gratitude
Her advocacy work with the Lupus Foundation of America, and how it empowers her
The fact that lupus disproportionately affects women, people of color, and people in the African diaspora
Why she feels its incumbent upon her, as a person of color, to work for change
“It’s not just about me anymore... I really just want to make sure that no one is left behind.”
Support for this episode comes from Ouchie. Ouchie is a free app for iOS and Android that provides solutions for chronic pain management. It uses evidence-backed tools like cognitive behavioral therapy, pain tracking, community support, access to resources, and integration with clinicians to help people feel better, faster. Check out ouchie.com and download the Ouchie app to see for yourself. Make sure to share with them that you found the app through Made Visible!