Lonely No More - How to Find Your Tribe

Living with a chronic illness can often feel like a lonely journey. The day-to-day challenges, the emotional rollercoaster, and the constant adjustments can leave you feeling isolated and misunderstood. But there is one sure fire way to cure the loneliness, and that’s to find your tribe.

The Loneliness of Chronic Illness
Loneliness is a common companion for those of us living with chronic illness. Despite being surrounded by family and friends, the experience can be isolating because others may not fully understand the daily struggles or the emotional toll it takes. The feeling of being different or not fitting in can exacerbate the sense of loneliness, leading to emotional distress and mental health challenges.

Why Finding Your Tribe Matters
Finding your tribe is essential for emotional well-being and support. Your tribe is all about people who share similar experiences, understand your struggles, and offer empathy, encouragement, and practical advice. Connecting with like-minded people can alleviate feelings of loneliness and provide a sense of belonging and acceptance.

How I Found My Tribe
By the time I turned 35, I had endured the challenges of five open-heart surgeries, living with complex congenital heart disease. Throughout my life, I had come across only a handful of people who shared this unique journey. The feeling of isolation was palpable, and despite the love and support of family and friends, there was a void that remained unfilled.

Then, by a stroke of fate, in 2018, I received a nomination to join the National Steering Committee for the development of Australia's first National Action Plan for Childhood Onset Heart Disease. This opportunity stemmed from my background as a Ministerial Advisor, delving into the world of politics. Little did I know, this experience would lead me to find my tribe.

As I engaged with the committee and its members, I found myself surrounded by people who understood the intricacies of living with congenital heart disease. The sense of understanding was immediate, and I was overwhelmed by the shared experiences and unspoken understanding that flowed between us.

Meeting so many people with congenital heart disease was both humbling and profound. It was as though I had stumbled upon a long-lost family, where words were unnecessary, and empathy flowed effortlessly. With just a glance, I could communicate my struggles and triumphs, knowing that they were met with genuine understanding and support.

The realisation hit me like a wave: I had finally found my tribe. For decades, I had navigated the ups and downs of living with a chronic illness without the comfort of shared experiences. But now, surrounded by people who walked a similar path, I felt a sense of belonging that had eluded me for so long.

This newfound connection was incredibly special and transformative. I reflected on how I had managed to navigate life's challenges for so many years without the support of my tribe. Their presence brought solace, strength, and a renewed sense of hope that I had longed for.

My journey to finding my tribe was serendipitous, propelled by unexpected opportunities and shared experiences. Through my involvement in shaping Australia's National Action Plan for Childhood Onset Heart Disease, I made friends for life with people who understood my journey in ways that others could not. It was a profound reminder of the power of connection and the importance of finding solidarity in shared experiences.

Where to Find Your Tribe
Charities and Support Groups
Charities and support groups dedicated to specific chronic illnesses offer a safe space to connect with others who are facing similar challenges. These organisations often host events, support meetings, and online forums where you can share your experiences and learn from others.

Here are a couple of great examples:

1. HeartKids Website: heartkids.org.au
2. Arthritis Australia Website: arthritisaustralia.com.au
3. Cancer Council Australia Website: cancer.org.au
4. Cystic Fibrosis Australia Website: cysticfibrosis.org.au
5. Diabetes Australia Website: diabetesaustralia.com.au
6. Endometriosis Australia Website: endometriosisaustralia.org
7. Leukaemia Foundation Website: leukaemia.org.au
8. Multiple Sclerosis Australia Website: msaustralia.org.au
9. National Asthma Council Australia Website: nationalasthma.org.au
10. Beyond Blue (Supporting Mental Health) Website: beyondblue.org.au

Podcasts
Podcasts have become a valuable resource for those seeking connection and inspiration. Many podcasts focus on chronic illness or wellness in general, featuring interviews with patients, experts, and advocates. Listening to these podcasts can make you feel less alone and provide valuable insights and coping strategies.

Community Groups
Local community groups or meetups can be a great way to connect with others in your area who understand what you're going through. Whether it's a walking group for people with mobility issues or a crafting club for those with chronic pain, these gatherings provide opportunities for social interaction and support.

Facebook Chat Groups
Facebook chat groups dedicated to specific chronic illnesses are virtual hubs where people share their experiences, ask questions, and offer support to one another. These groups provide a sense of community and allow you to connect with people from around the world who truly understand your journey.

The Power of Connection
Finding your tribe isn't just about sharing your struggles; it's about celebrating victories, big and small, and lifting each other up. Through shared experiences and mutual support, you can find strength, resilience, and hope. Remember, you are not alone in your journey, and there are people out there who understand and care.

P.S.

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