What it’s like as a young person living with a life changing illness

Living with a life-changing illness as a young person is frustrating, disheartening and transformative. I turned 22 last month, and have been reflecting back on the condition that irrevocably interrupted my adolescence, and now adult life.

Despite graduating in 2016 with a hard-fought Bachelor of Business, I am unable to work full-time like I had hoped. My underemployment isn’t due to job availability or quality of education; I am unemployed because I live with disabling health symptoms. A source of constant confusion to health professionals and other members of society, I am often labelled as being depressed or lazy because of my health condition; this is incorrect and a very clear result of a poor scientific & societal understanding of ME/CFS.

Seemingly precipitated by a perfect storm of school study stress, working in the family business, and chasing my ambitions, my health first deteriorated in 2011, during my penultimate year of high school, and has boomed and busted for 6 years since. In the following year (2012) I was elected College Captain at Trinity Lutheran College in which I fulfilled my role to only a fraction of what I planned and desired. After a stressful, health affected year I only just graduated with my high school certificate.

I tried and failed to begin my undergraduate business degree at Bond University multiple times, and the pressure build-up was only made worse by being awarded a significant scholarship that had to be started within one year of receiving it. In 2014 I had completed 3 semesters of part-time study and by 2015 pushed myself to go full-time. I began living a more normal life until I crashed hard and fast in early 2016 and took nearly 9 months complete rest, mainly house and bed bound. Since then I have improved considerably and live a restricted lifestyle in which I work a few hours a day on new entrepreneurial projects. I’ve recently started a chronic illness social group for young people because nothing else existed in my local community, and that was very isolating.

Living with a disabling health condition has significantly affected how much I’ve been able to apply myself. I want to be a contributing member of society that lifts my local community financially and socially. Currently, I lean on public systems and rely on family support, which is far from the vision I had and have for myself. Today, ME/CFS research is grossly underfunded and neglected, with equitable funding there would be much higher chances for young people like myself to be valued members of our community.