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 Emma from the United States!
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 Emma from the United States! Thanks for sharing your story! ❤️
Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill.
What health conditions do you have?
Pseudotumor Cerebri.
When I was 12, I was diagonsed with a disorder called Pseudotumor Cerebri. The best way to describe it is that my body believes I have a brain tumour, without one physically being present in my brain. I experience symptoms that are consistent with a brain tumour like migraines, eye pain, visual disturbances, nausea, brain fog, fatigue and ringing in my ears. The pressure in my head created by cerebrospinal fluid can get very high and it affects my vision, I've lost most of my peripheral vision and often have blurred vision.
How do you explain your health conditions to other people?
I explain that my body believes and mimics the symptoms and signs of a brain tumour without one physically being present.
What impact do your health conditions have on your daily life?
I experience all the symptoms consistent with a brain tumour like migraines, eye pain, visual disturbances, nausea, brain fog, fatigue and ringing in my ears. I’m always sensitive to light, smell and sound. So I'm often found kicking back with my sunglasses, earplugs and peppermint oil. I struggle a lot with brain fog, which can make conversations difficult.
What barriers have you experienced in making friends and connecting with people?
I was diagnosed at a young age which made it difficult to connect with others. Any exertion worsens my symptoms, so exercise is practically impossible and I’ve had to find activities that don’t exacerbate my health. I’ve basically adopted a grandma lifestyle to avoid stress and exertion.
What's been your experience on Spoony so far?
Getting to connect with others who understand the daily struggles of living with a chronic illness. This is my community and having reassurance that I’m not the only one experiencing these things makes it much less isolating.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.