About This Episode

Shanelle Gabriel has performed at Carnegie Hall, at the Vatican and on HBO’s Def Poetry Jam. She’s also lived with lupus since 2004, and about 10 years after her diagnosis she developed antiphospholipid syndrome (APS). On this episode of Invisible Strength, the Brooklyn-born poet and singer talks with Karin and Chris about the year of symptoms she explained away, the three days she performed with two blood clots in her lungs, and why she believes every newly diagnosed person needs a mental health professional.

Key Takeaways

• In college, Shanelle wrote off headaches, joint pain, hair loss and brain fog, even telling herself she was “getting older” at 19.
• She was diagnosed partly by luck: her primary care office was right next door to a rheumatologist.
• She performed for three days while carrying two blood clots in her lungs, a lupus-related complication called APS.
• She’s learned to see her worth in “the gift” she brings, not in any single title, including “patient.”
• Her advice for the newly diagnosed: find a therapist, not just a support group.

“I’m getting older. I’m 19.”

Shanelle’s first symptoms showed up in college: headaches, joint pain, hair loss and brain fog. Her fingers would turn white, hurt and then turn red, and she assumed it was because she was cold. “All the things I excused all ended up being symptoms for lupus,” she said. “I was just like, ‘Oh, I’m getting older. I’m 19.’”

Diagnosed by the rheumatologist next door

Her primary care doctor happened to be right next door to a rheumatologist, and that doctor knocked on the rheumatologist’s door. She came over and said, “Everything is swollen on you.” Shanelle knows how lucky that was. If it had been anyone who didn’t see lupus regularly, she says, “the way that I kind of slow-rolled my symptoms, I would have never gotten diagnosed.”

Three days with two blood clots in her lungs

Years later, she ignored a pain in her side and figured it might be pleurisy. “For three days I walked with the pain of having two blood clots in my lung,” she said, “just walking with the pain, ’cause I was like, ‘I got a show.’” Even in the hospital, her first question was whether she could make it back for that night’s performance. “It’s like your body is fighting your brain,” she said. Her body was saying it couldn’t, and her brain was saying it could do everything.

That story is a powerful reminder: pushing through isn’t always strength. Sometimes the bravest thing is to stop and get care.

The gift, not the title

Shanelle has had to pivot many times because of her health. What helped was letting go of titles. “It’s really not the title, it’s the gift that I’m bringing to it,” she said. That includes not clinging to “lupus” as the sole definition of who she is.

Why she says to find a therapist

Shanelle wishes someone had told her this at diagnosis: “No one ever recommends a therapist to help you transition this. No one ever suggests that.” When she did go to therapy years later, for something else, she found herself talking about lupus and identity much of the time.

Shedding what no longer serves you

She also talks about the ongoing “shedding” that living with lupus requires, of commitments and even relationships that don’t support your health. “There’s a shedding that has to happen where you’re like, okay, this thing was cool, but this might not be working for me right now.”

What invisible strength means to Shanelle

“Invisible strength to me is the strength you have when no one’s looking, when no one’s going to applaud you for it,” she said. “No one maybe knows everything you’ve accomplished, or everything that you battled, or every dark night that you dealt with. But somehow you are still standing.”

Shanelle is working on a book and a fourth album. Follow her at @shanellegabriel.

Free resources: Grab the free RESET workbook (https://invigorateyourjourney.com/reset-workbook) or take the free 2-minute Journey Quiz (https://invigorateyourjourney.com/quiz/).