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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 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.
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.
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.
- 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?
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