Megan Marx is opening up about the quiet, complicated grief that comes with living with a rare degenerative brain disease.
In a personal essay published by Mamamia on Feb. 20, the former “Bachelor Australia” star reflected on what she describes as “grieving an unlived life” three years after being diagnosed with spinocerebellar ataxia. The 36-year-old explained that her grief is not centered solely on the diagnosis itself, but on the slow and ongoing realization that the life she once imagined may not fully materialize.
“There is a kind of grief that rarely earns a name,” Marx wrote. “It is not the grief of death, nor even the grief that follows a diagnosis. It is the grief of the life we imagined we might live, and the slow recognition that it will not arrive.”
Rather than dismissing those feelings, Marx said she has learned to acknowledge them. She described the distance between hope and physical capacity as something that “deserves” to be mourned, adding that ignoring regret can quietly harden into identity over time.
Why She Says She’d Never Start a GoFundMe
In a separate February essay for Mamamia, Marx expanded on how her illness has shaped her perspective, particularly when it comes to public fundraising. While addressing recent backlash surrounding celebrity GoFundMe campaigns, she admitted she feels a visceral discomfort when wealthy or well-connected individuals turn to crowdfunding, even if nothing improper is happening.
Marx, who lives with spinocerebellar ataxia, said that even as her condition progresses and experimental treatments remain financially out of reach, she would never launch a fundraiser for herself. She described her reasoning as “triage,” explaining that she considers herself financially stable and aware that others face far more immediate crises.
She noted that crowdfunding has increasingly come to function as an emergency safety net for people whose medical bills, housing instability or other hardships leave them with few alternatives. In that landscape, she suggested, the emotional response many people feel is less about judgment and more about collective fatigue and blurred boundaries around need.
At the same time, Marx emphasized that grieving what she has lost is not the same as rejecting her present life. By naming that grief, she said she has been able to focus more intentionally on what remains, narrowing her world to what is sustainable and meaningful, including time outdoors, creative pursuits and close friendships.
From Reality TV to Real Life
Long before her diagnosis, Marx first entered the public eye as a contestant on “The Bachelor Australia.” In 2016, she made headlines when she and fellow contestant Tiffany Scanlon revealed they had found love with each other after filming, per People. While that relationship later ended, Marx has since spoken openly about the pressures that came with public scrutiny and how those experiences shaped her growth.
Today, her focus is less on headlines and more on living honestly with her condition. Spinocerebellar ataxia is a rare, inherited neurological disorder that affects coordination and mobility and gradually worsens over time, according to the Cleveland Clinic. There is currently no cure, and treatment centers on symptom management.
For Marx, embracing grief has become part of that management. As she wrote in her essay, “Mourn what was lost, but remember what is still left of your life.”
Bless your soul Megan. You’re a brave and beautiful person. Your writing inspires everyone esp. me.
May your journey give you love and life that you can be proud of.
Peaceful moments are helpful.