Kia ora, I’m Bethany and I was enrolled in Southern Health School during 2023-24 (Year 12 and 13 equivalent). As you read about my experiences and the impact Health School had on my journey, I hope my story will help someone else to feel less alone and encourage you to keep going.
My early teens were very challenging, navigating anxiety, depression, change and injuries, but I loved school and learning, was involved in my church community, gymnastics and other activities.
Having returned to school after a concussion in mid-2021 and since experiencing a chronic headache, vertigo and other symptoms, I survived the day and then would crash at home. My health declined further at the start of 2022, going into Year 11. The more I pushed myself and tried to hide my struggles, the worse I would function. Losing the top of my finger and subsequent viral infections, I began falling asleep in class, fainting, zoning out and was unable to complete my work. Going to church or a youth group completely wiped me out. I was experiencing extreme fatigue, cognitive dysfunction, post-exertional malaise, widespread pain and symptoms affecting my whole body, which we can now attribute to a group of neuroimmunological illnesses – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) and Fibromyalgia.
I was fortunate to access a diagnosis of ME/CFS 6 months later, which made me eligible for Health School the following year; however, it was still an extremely difficult journey. I experienced a lot of misunderstanding and assumptions that were often made about the nature of my illness. There was no space for me to rest or lie down at school, so I ended up collapsing in random places and frequently being sent home. With high self-expectations and feeling like I needed to push myself in order to be believed by others, my health continued to get worse.
2023 was a really rough year both physically and mentally – life as I knew it had significantly changed and everyday tasks were a challenge. The loss of function and things I enjoyed, uncertainty and social isolation was hard. I developed a lot of anxiety around what others thought of me and often had flashbacks to previous experiences. I had created strict rules for myself that led to feelings of guilt, stole my joy and made it hard for me to enjoy the things I could still do. I struggled with comparison and found it hard to communicate and understand my limitations, meaning social interactions were stressful.
Health School provided a safe and welcoming environment where I looked forward to spending a few afternoons each week. Accepting the reality of my situation was hard and I was in denial for a while. The staff were amazing at every step of my journey as I processed, grieved, navigated medical appointments, new symptoms and constant uncertainty. They validated that what I was experiencing was real and I wasn’t being lazy. They reminded me of my strengths when I couldn’t see them, helped me to find confidence in myself and my love of learning again. Whether it was working towards an assessment over several months, doing creative activities such as art and baking, or just learning something for fun, my teachers helped me to set achievable goals and find new things I could do when formal study wasn’t possible.
Getting support for my mental health (i.e. medication, therapy) didn’t change my pain or fatigue, but allowed me to experience joy again and find freedom from the past. It’s still a journey and I grieve the things I can’t do, but in 2024, I became a lot better at focusing on what I could control, allowing myself to enjoy things in my current capacity and starting to find new hobbies. Faith has been an anchor, a guide, a source of comfort and grace during my darkest days. I began writing again, starting with a few reflections on social media and later sharing more personal thoughts on a blog. Vulnerability had always been something I feared, but I learned that openness can be a source of strength and that sharing my experiences could help and resonate with others.
Now 19 and no longer enrolled at Health School, ME/CFS and its comorbidities still affect me significantly. At the beginning of this year, I started a new page to share my health journey publicly. This is something I never thought I would do, but I also feel that my experiences have motivated me to find my voice and use it to advocate for others. I’m so grateful for the people I’ve met and the opportunities this has led to.
2025 has been filled with ups and downs. It is a process of creating and adapting my routine, learning how to rest properly, having enough stimulation and purpose in my week, but also not too much. I’ve often struggled with societal expectations around suffering and compared myself to “success stories” or things other people were able to achieve despite challenges. My experiences have shaped my values, shown me that sometimes things happen outside of our control and it’s ok not to be ok. My faith has redefined the way I see resilience, my worth and identity. Life is precious and we can’t take the small things for granted.
