I was born and grew up in the snowy mountains of NSW where my family ran a ski lodge. My brother (5 years my senior) and I were fortunate to have the snowfields as our winter playground and our summer backyard. Despite health issues, which later lead to a diagnosis of Ehlers Danlos, a connective tissue disorder, my childhood in the mountains was a happy one. While in primary school, most of the winter months were spent doing home schooling and distance education due to a stroke at seven and learning difficulties.
At the completion of primary school, I attended a school in the Southern Highlands of NSW as a boarder. The pastoral care at the school was excellent however I was extremely homesick and unhappy. At this time in my life I was unfortunately exposed to bullying by older boarders. I was unsure then and even now as to why I was victimised and thought it was perhaps because of my disability. During the three years at this school I was aware myself of being gay but had no knowledge of how to share this with anyone. I imagined that it would simply make my life, already complex with health and learning issues, more complicated. This is the reason that I kept my sexuality a secret for 20 years since puberty.
The complexities of Ehlers Danlos syndrome are far-reaching and multifaceted, and along the way I have even encountered medical professionals who have doubted my symptoms and reports of this condition. I was in my late 20's before I acknowledged and accepted that my disability was long term and ongoing. The toll on my mental health has been immense and I now realise the necessity of treatment and how my well being has to be approached in a holistic way. This also means to find reliable medical professionals and support workers that understand and empower me. Coming to terms with my disability, means I had to grieve the life i wanted for myself and learn to accept my life as it is, and make the most of what I have.
Because of my disability, I didn't have the energy or time to explore sex and love like most people, nor did I believe anyone would date me or accept me because of my disability. For a long time I held onto fear and shame about what friends and family would think of me. This only created more personal suffering that lead to self isolation and a sense that I didn't belong. I encourage people to come out sooner and not wait too long, life is too short to live in fear and shame, when we can be honest with ourselves and live an enriched fulfilled life.
Over the past 2 years, I've had time to reflect a lot on my emotional and mental wellbeing and I realised the impact fear and shame had on my body, mind and spirit. Coming out for me meant I could finally be honest with myself and release the shame and fear I’ve held onto for so many years. The process of ‘coming out’ was an act of self love and compassion. Although I still had fear about negative judgements of others, I knew being honest with myself was essential and the catalyst for personal growth and becoming more empowered. I feel I can have more authentic connections with people and inspire others to be true to themselves and help release any shame they’re holding onto.
For me, someones sexual orientation shouldn't define who they are. What's important is bringing joy, kindness and love to people around me. I believe there’s power in vulnerability, people who share their personal challenges with others create the positive change we need in society. In the sharing may we create supportive communities and make having these difficult open conversations a norm. It may just give someone the hope they need to heal. I have shared my personal journey through art, and have met so many wonderful people along the way. Art is a powerful platform to raise awareness about mental health and bring about positive change. Creating art has had so many benefits in my life. It’s helped me reduce my stress, it’s been a great distraction from my chronic pain, and has increased a sense of well-being and other positive emotions.
Even through my day-to-day health challenges, I try to see the positive in it all.
I don't want my pain to go in vain, my personal journey has allowed me to tap into strength I never knew I had. I am endeavoring to make the choice of not becoming a victim, but to be a beacon of light, strength and hope for others. My mission is to raise awareness about EDS, chronic pain and mental health around chronic pain, so we can create a community and help other people like me to have more support and insight, as well as raising more awareness about it in society. Hopefully, this will create more advocates like me and encourage more Medical Health Professionals to specialise in this area.
Regarding love, I hope to find a partner who can love and accept me for all that I am. Someone who can see past my challenges, who shares the same values and insight to life. Together may we tackle all of life testing times and share all of life's beautiful moments.
Beautiful story, what an inspiration you are to me and to anyone who reads this.
you are great at everything you have done ✔️