Lessons in living with a rare disease: what living rare has taught me
Written by Bailey Hunter
Bailey Hunter shares her personal insights of living a rare life, teaching her resilience, solidarity, advocacy and to live life fully
Living with a rare disease teaches you lessons you never asked to learn. It changes how you move through the world. It teaches patience in waiting rooms, courage in conversations you never expected to have and resilience in moments when your body does not cooperate. Over time, rare becomes less of a label and more of a lens that shapes how you see yourself, relationships and what truly matters. What I have learned is that rare not only describes a medical condition. It describes a way of living with more intention, more awareness and more strength than you knew you had. Rare teaches you to listen to your body, to advocate for what you need and to find community in places you never imagined. These lessons are shaped by setbacks, small victories and the quiet determination to keep going.
Resilience is more than being tough
Before my rare disease started impacting my daily life, I did not know the true meaning of resilience. I had seen it on inspirational posters and thought it was about being tough. In recent years, I have learned resilience is far more than being tough and pushing through hard things. Resilience is choosing to show up on days when everything is hard and takes more effort. It is adapting when things change and even giving yourself permission to rest. Rare teaches you that resilience is less about never falling apart and more about learning how to gather yourself again. Some days it is tackling challenges with confidence, others it is making it through the hour in front of you. Both take courage and deserve to be recognised. Most importantly, both are resilient.
Solidarity is common
One of the most surprising lessons rare taught me is that you can feel completely isolated and deeply connected at the same time. Many people will never fully understand what life is like with a rare condition. They may never see the hours spent managing symptoms, the adjustments tucked quietly into your daily routine or the exhaustion that arrives without warning and it can feel so isolating. But then you meet people who simply get it. They do not need a detailed explanation of the weight you carry. They know the language of uncertainty and the relief of being believed. These are the people who remind you that you are not alone even when your condition feels like it separates you from the world. This community does not erase the hard days but it makes them less heavy. It offers hope, humour and honesty. It celebrates with you when something goes well and sits with you when it does not. It shows that while rare diseases may be uncommon, solidarity is not.
The meaning of advocacy
Living with a rare disease means learning to advocate. It may start with explaining your needs, correcting misconceptions or asking for accessibility that should already exist. Over time, these things build confidence. You start to see that your voice matters not only for yourself but for others who face similar challenges. Advocacy is not always loud. Sometimes it is a conversation, a reminder or a story shared at the right moment. It can be choosing to show up in spaces where disabled voices are often overlooked. Small actions add up, shift perspectives and create change. Through advocacy, I learned that raising awareness is not about highlighting personal hardship, it is about shining a light on barriers that should not exist in the first place and the systems that need to grow. Advocacy is about helping people understand that accessibility is essential and building a world where rare diseases are met with curiosity, compassion and support instead of confusion.
Living fully
The most important lesson rare taught me is that life does not end because of a diagnosis. Life goes on in unexpected and meaningful ways. There are still dreams worth pursuing, relationships worth nurturing and moments worth celebrating. Rare may shape your days but it does not have to diminish them, you can still live fully. Living fully does not mean ignoring reality, it simply means finding purpose within it. For me, that includes faith, advocacy, community and the pursuit of goals that make me feel whole. For someone else, it may mean creativity, family, learning or simply enjoying the calm moments of an average day. Rare teaches you to value those moments deeply because nothing is taken for granted. There is still joy, purpose and a life beyond the diagnosis. It may be quieter or more complicated, but it is no less meaningful. Living with a rare disease is unpredictable and challenging but it teaches you invaluable lessons that shape how you see yourself and how you show up for others. They reveal the courage you did not know you had and the community you did not know you needed.
Rare Patient Voice are the proud sponsors of the Patient Voice section of RARE Revolution for February, March and April 2026. They provide patients and family caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies and clinical trials. The RPV community includes over 185,000 patients and family caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. Learn more here.
