Jenny, who lives in Melbourne, has waged one hell of a battle for more than three decades. She’s been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). She fell sick with the flu shortly after and was diagnosed. By the late 2000s, her illness severely progressed to the point where she was mainly housebound and bedbound. This debilitating illness severely limits what she can do each day. It has changed her family, with her partner and teenage child having to go on this path of isolation together.
For Jenny, it all started when she got the flu — a virus that most people get over in days, not weeks or months. For Jenny, recovery never came. She soon fell ill and, within a year, was diagnosed with ME/CFS. This illness is taxing, leading to extreme exhaustion and other crippling effects. The late 2000s was a watershed moment for her. As her condition progressed, travelling became increasingly difficult and she was unable to pursue passions like hiking Tasmania’s wilderness areas and going on overland trips from London to Kathmandu.
Prior to her sickness, Jenny had an active social life. She enjoyed lingering till the last moment of every meeting. Now, though, she has to endure daily mournful reminders of the life that’s been taken from her. The then-recommended treatment— Graded Exercise Therapy —turned out to be harmful, worsening her symptoms instead of improving them. The cumulative impact is a life mostly lived within the four walls of her home, with serious physical and emotional costs.
In 2012, Jenny’s health created the need for her to drop out of school so she could be quarantined at home. This decision had a huge impact on her education. It caused a significant reduction in income for both her and her partner. When mounting medical expenses are a cause of their financial instability, those tragedies complicate their lives even more.
Even through all these challenges, Jenny and her partner realized a new sense of purpose in the advocacy work. They collaborate with Emerge Australia, an organization dedicated to improving awareness and treatment for ME/CFS. Their diligence has received national attention in due part. In turn, federal MP Dr. Michelle Ananda-Rajah took up the baton and told Jenny’s story to MPs in parliament. This exposure ignited a promise to finance improved clinical guidelines for ME/CFS. It gives hope for more progress in the care provided, as well as better understanding of the condition.
The empty world Jenny inhabits might be filled only with restrictions, yet even minor victories still promise hope. Going to the movies or the mall is an event for her. These few uncomplicated chores punctuate her otherwise very curtailed life. These moments offer a glimpse into what normalcy once looked like and provide a sense of accomplishment amidst ongoing struggles.
Along the way during this difficult journey, Jenny’s husband is consistently and supportively present. They all share a deep commitment to advocacy and continue to help educate the public about the painful realities of living with ME/CFS. Their collaborative work brings home the individualized effects of this disease. Beyond their findings, they highlight the deeply troubling societal consequences that demand immediate accountability and reform.
