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 Nikki from New Zealand!
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Welcome to Spoony Stories ❤️🥄 We're forever and always blown away by the kindness and generosity of our community on Spoony! 😍♥️ No wonder the best part of our week is getting to know some of the people who make Spoony so wonderful and learning more about their experiences with neurodivergence, chronic illness and disability.
This week, we've been chatting with Nikki from New Zealand. She shares about why she feels comforted on Spoony, what it's like living alone while managing chronic illness flare ups, and much more! Thanks for sharing your story! ❤️
Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill and disabled.
What health conditions do you have?
ME/CFS and POTS.
How do you explain your health conditions to other people?
I try to avoid explaining anything as much as I can. But if I have to explain, I just say that I faint a lot.
What impact do your health conditions have on your daily life?
My brain fog, fatigue, and orthostatic intolerance have a significant impact on my life. Some days, I can manage an hour out of the house, and other days I can't feel my legs or stand for longer than going to the bathroom. I live alone and I have days where I stay in bed for the whole day.
What barriers have you experienced in making friends and connecting with people?
Some people assume that I'm flakey because my illness makes me unreliable. In reality, I can't predict when my symptoms will get worse. Even when I'm included, there's a barrier because I can't physically keep up with everyone else. After a while, people don't know what to say, and they slowly stop including me because it's uncomfortable for them.
What's been your experience on Spoony so far?
I only just joined, but I've felt more validation than I've ever felt before. By society's standards, I should be achieving more in my life - I should be married, having kids, buying a house. But that’s not my reality. Spoony accepts me for where I am, how I am, and who I am.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.