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 Jasper 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 Jasper from the United States! Thanks for sharing your story! ❤️
Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill and neurodivergent.
What health conditions do you have?
Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), ADHD, Paranoid Schizophrenia and Contamination OCD.
I was diagnosed with EDS in 2020 and developed POTS after catching COVID. I have really bad ADHD which has made my memory issues worse and it impacts me everyday. I’ve had Paranoid Schizophrenia and contamination OCD since I was a child, but I didn’t know about it until I was 18.
How do you explain your health conditions to other people?
I just simplify it. If they want more details, I’ll give them websites to research. I have a lot of conditions and explaining all of them in detail would take hours.
What impact do your health conditions have on your daily life?
My EDS affects everything that I do and causes me a lot of pain. I don’t have any mobility aids because my household doesn’t believe that I’m disabled, so I struggle with flare ups a lot. My POTS is mild, but it has made me significantly more sensitive to temperature and less tolerant of temperature changes. My ADHD creates memory issues and I find it really hard to deal with. Schizophrenia and OCD make me hyperaware of what’s going on in my brain and sometimes, it can be hard to remind myself that things are okay.
What barriers have you experienced in making friends and connecting with people?
I often have very little spoons because a lot of my conditions cause chronic fatigue. Sometimes I forget that people exist and then they get frustrated and end up not talking to me. It can be very isolating. I long for community, but often don’t have the energy or ability to keep up with the connections I make.
What's been your experience on Spoony so far?
It’s easy to find other people who know what I’m going through and can help me answer questions about my conditions. I’m dealing with my health on my own because my family refuses to acknowledge that I’m neurodivergent, chronically ill and disabled. It’s really nice to finally meet people who know what I’m going through. If Spoony had existed in 2020 when I first became physically disabled, I wouldn’t have struggled as much.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.