Welcome to Spoony Stories ❤️🥄 Sharing stories is a powerful reminder that we're not alone. Each week, we share stories from our vibrant community to hear all about their experiences being neurodivergent, chronically ill and disabled, and to get to know some of the voices that make our Spoony community so wonderful. This week, we chat with Lio from the United Kingdom!
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Welcome to Spoony Stories ❤️🥄 There's no place like Spoony, that's for sure! We have the kindest community and it's been so much fun getting to know some of the wonderful people on Spoony and learning more about their experiences with neurodivergence, chronic illness and disability.
This week, we've been chatting with Lio from the United Kingdom. They share about what it's like living with a rare genetic condition, the struggles of friendship, and much more! Thanks for sharing your story! ❤️
Are you neurodivergent, chronically ill, and/or disabled?
Neurodivergent and disabled.
What health conditions do you have?
X-Linked Hypophosphatemia (XLH), Autism and ADHD.
How do you explain your health conditions to other people?
I try to keep it simple, I say that XLH affects my bones. If people want more detail, I tell them that my body struggles to process phosphate, which is needed for strong bones, and my joints and bones will break down over time. The condition changes how my body is shaped and how I move. With Autism and ADHD, I explain that my brain processes the world differently. It's not something I can turn off or fix - it's just how I am.
What impact do your health conditions have on your daily life?
All my health conditions have a big impact on my day to day life. With XLH, I struggle with fatigue and stiffness, but one of the biggest things for me is my height. I struggle to accept my short stature that's a result of XLH because I worry that people won't take me seriously or will see me as lesser. ADHD and Autism have the biggest impact on my life. Executive dysfunction can make it hard to start or finish tasks, sensory overload can transform a normal day into an exhausting one and social interaction can feel draining, especially if I have to mask. All of this can make me feel alienated, like I'm existing in a world that wasn’t built for me, where I have to constantly adjust myself just to keep up. It's exhausting and sometimes it feels lonely, like no one understands what it's like to navigate the world in my body and brain, but I remind myself that I'm not alone, even if it feels that way. I’m learning to work with my body instead of against it, to accept the things I can’t change, and to find spaces where I don’t feel like I have to fight to be seen.
What barriers have you experienced in making friends and connecting with people?
I haven't had a friend before, and I often feel isolated because of that. ADHD and Autism have made it hard to connect with others. I've struggled in social situations with knowing how to act, reading social cues, feeling overwhelmed by loud environments, and my unpredictable energy levels. It makes me sad that I don't have anyone around my age to share things with.
What's been your experience on Spoony so far?
I love that Spoony is just for people like us - neurodivergent, chronically ill and disabled people. It's a space where everyone understands each other's struggles without needing to explain it over and over again. I've received so much support and validation from others who truly understand and it's made me feel less isolated
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.