Australian reality television personality Megan Marx is reflecting on the emotional toll of living with a rare and degenerative neurological condition, and how it has redefined the way she tackles everyday life.
The 36-year-old, best known for her appearance on "Bachelor Australia," wrote about her challenges with "invisible grief" in a recent personal essay for "Mamamia," after being diagnosed with spinocerebellar ataxia (SCA).
"There is a kind of grief that rarely earns a name," she began. "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."
According to the National Institutes of Health, SCA is a progressive, incurable genetic disorder that mainly affects the cerebellum. It causes loss of muscle control and movement, and affects speech and other fine motor skills.
About one to five of every 100,000 people are diagnosed with SCA. To date, there are over 40 identified forms of the disease.
Marx publicly revealed her diagnosis on Instagram in 2023. In her essay she described the past several years living with chronic illness and how the diagnosis finally gave her clarity.
"A later diagnosis of spinocerebellar ataxia ... gave language to what had always been present: a body and mind operating under constant strain," she wrote.
"It explained years of instability, fatigue, and inconsistency that had been misread by others and by myself as personal failure. These forces did not merely interrupt my life; they structured it."
Marx admits her life has been shaped by "survival" both physically and emotionally. Her current grief stems from mourning the loss of future expectations while attempting to find the means to be more present.
"The distance between hope and capacity becomes a defining feature of existence," she wrote. "That distance deserves to be mourned.
“Grieving an unlived life is not a refusal of reality. It is an act of honesty. Something was lost,” she continued. "I carry an awareness of this grief, but I am careful not to let it contain me.
"I want a life that is workable and free in the ways that matter. That has required deliberate narrowing. In recognition of my neurological disease, and in protection against relapse, I have stripped my life back to what can be sustained."
Marx, who rose to fame in 2016 on the "Bachelor" franchise and later appeared on "Bachelor in Paradise" and "The Challenge Australia," shows no signs of slowing down. She remains active, enjoys the outdoors, traveling and even painting, all hobbies or tasks that don't pose as distractions but rather "structure."
"When I allowed myself to grieve the life I could not have, I became more present to the life that remains," she added. "I am less tethered to impossibility and more attentive to what is still available.
"Mourn what was lost, but remember what is still left of your life. In doing so, you clear space not for fantasy, but for a life that is honest, inhabitable, and still your own."