Patient Blogs | Lupus
How Lupus Shook My Identity
photo of woman looking in mirror

People are coming into the knowledge of the who, what, where, why, and how that makes us who we are. Identity matters. Key facets of our identity might be gender, social class, sexual orientation, race and ethnicity, religion, age, and somewhere in between. The very fixed box once used to characterize someone has been shaken up, reminding us of the intersectionality within.

In 2010, a lupus diagnosis caused my own box to become even more frayed, exposing the fragile contents of me. Since then, I’ve been forced to sift through the contents and consider: Who am I?

If you’ve made it through my first blog, thank you for hitching a ride on my expedition. If not, spoiler alert: I married that whimsical guy who still believes “our future is looking bright.” It’s important to note this, because my lupus diagnosis and my wedding are in tandem to each other. The shaking I experienced quickly became shame, telling only close family members and friends of my illness.

I tried so hard to keep lupus in a silo. (Ha!) I was embarrassed to be associated with the identity of a patient. I lived in willful denial for months, refusing to admit even to myself the painful, potentially disabling and fatal nature of lupus, lupus nephritis, or fibromyalgia. At the time, I wanted to solely focus on beginning my new role as wife, in our new home, or my new coveted role as manager of operations in financial services recruitment, not lupus. 


I was unwittingly striving to keep up with unrealistic expectations as an Afro-Caribbean-American, ableist black woman, wife, career woman, etc. I set brunch dates for 11 a.m. on hot summer days. I attempted to travel without wheelchair assistance. In my head, it sounded plausible.  After all, I was an athlete – I’d bounce back! I didn’t account for the growing chronic fatigue, photosensitivity, or inflammatory and functional pain.

That’s the irony of having an “invisible illness”: It upstages the show. Living with a chronic illness is like having an unwelcomed house guest that refuses to comply with existing house rules. Experiencing eczema from just months old still couldn’t have prepared me for the new me. I had always been a “type A” individual – motivated, confident, sensitive to time, sociable, etc. I associated the success of who I was as an individual with accomplishment, title, productivity, ability – everything society and culture defined.

My Antiguan parents often reminded my brother and me not to be lazy. I heard their voices in my head while I fought like hell to hold on to some semblance of a “normal” me – dependable, helpful, energetic, goal-oriented. All attempts to “keep up” forced me further into crisis of my identity.

There was no area of my life left untouched by lupus. Everything I thought of myself was tied to the limitations of my body. I lost independence (financial & physical), the ability to work, earn a living, socialize, be the lover I desired to be, my ability to drive. (I love to get behind the wheel and go.) There was a discrepancy between the things that made me “me” and the person that needed regular naps.

I questioned, “What is my purpose? Who am I in my marriage? How am I contributing to my family and society?” The loss was real, like an erosion or slow mourning of self. (I wish someone had warned me about this inevitable side effect.) Raw feelings of grief, displacement, brokenness, abandonment, isolation, expendability, and invisibility weighed heavily on me. If you’re reading this and carrying that weight, that is not your portion. 

Under New Management

I won’t sugarcoat it: There’s no easy way to negotiate the new idea of self, especially while lupus looms. Remember that house guest? It now receives mail!

To this day, my medical appointments and EMR include active lupus, high-risk, immune-compromised, at-risk, disabled, etc. I grew tired of just being reduced to clinical terms; that wasn’t going to serve me in my new life. I began to consider: “If lupus has a story that changes, why can’t I?” Why can’t I revise my own narrative? So, a few years ago, I decided to lean in on reconstructing myself. I had nothing else left to lose, literally.

I was wasting away, living in adult diapers, with just months to live. The toughest part was loosening my grip on what was, along with unhealthy notions I had of being a sick person. I began to surrender to the journey of lupus, rather than avoid it. Doctors expect you’ll readily accept diagnoses, but that’s not the case. Incorporating a long-suffering disease into your identity is an entire process! One to approach with mindfulness, time, self-care, and grace – because we owe it to ourselves. 

Through surrendering, I’m finding a new lived experience. I’m tapping into my spiritual and mental healing, new connections, and the power of community and serving others.

My body still has its own plans, so I find gratitude in the minutes, not just the day. Here are a few truths lupus can’t change:

  • I am fearfully and wonderfully made.
  • I not only have purpose, but I’m charged to protect and nurture it.
  • I belong.
  • I am not “just” anything (just a lupus patient, just a wife, etc.).
  • I am enough.
  • My self-worth is not to be negotiated.
  • I can bloom where I am planted.

I’ve shifted from the permanence of lupus to the possibility of who I can become with lupus.

Who I’m becoming depends on a continuous interplay between my health, psychosocial, systemic influences, and all the various “lemons.” I’m choosing to re-envision my story. Will you?




Photo Credit: Vladimir Vladimirov / E+ via Getty Images

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Monique Gore-Massy

Monique Gore-Massy

Diagnosed in 2010

Monique Gore-Massy is a global and national lupus advocate with organizations like the Lupus Foundation of America and American College of Rheumatology. Her journey from patient to advocate comes from empathy, faith, and a curiosity to edify others. She collaborates with stakeholders on research and quality initiatives, lupus awareness, and improving outcomes while advising on equitably embedding patient centricity in care. She strives to stir up hope so all patients can be found “in the room where it happens.” She is Mr. Chip’s pawrent, Alvin’s wife, and a minister. Link with her here.

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