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 Eric from the United Kingdom!
Welcome to Spoony Stories ❤️🥄 There's such a genuinely lovely community on Spoony! We love 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 Eric from the United Kingdom. He shares about what it's like to live with a rare autoimmune disorder, what he's been getting up to on Spoony, and much more! ♥️
Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill.
What health conditions do you have?
ANCA Vasculitis and Chronic Kidney Disease.
I was diagnosed with ANCA Vasculitis not long after my 19th birthday. I was also diagnosed with Chronic Kidney Disease Stage Four.
How do you explain your health conditions to other people?
I explain that ANCA Vasculitis means that my small blood vessels become inflamed due to antibodies overworking and attacking the body and organs. This led to my Chronic Kidney Disease diagnosis because it caused irreparable damage, leaving my kidneys scarred and low functioning. There is no cure, only treatment to suppress the symptoms and control the antibodies.
What impact do your health conditions have on your daily life?
My health conditions have a big impact on my life. I'm constantly exhausted and running low on energy, I have presyncope episodes that includes dizziness, heart palpitations and nausea, and my immune system is suppressed because of treatments, which makes me more vulnerable to common infections and viruses.
What barriers have you experienced in making friends and connecting with people?
I struggle to meet up with friends in person because it depends on how I'm feeling that day. Sometimes, I push down how I'm feeling so I can spend time with them. I find it difficult to stay up late and play games online with my friends because I'm so tired all the time.
What's been your experience on Spoony so far?
I love that Spoony is such an accepting community, I've made quite a lot of friends, and had some really touching and kind words from fellow Spoonies.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.