November 14, 2024
Missed our live event? We've got you covered.
Check out our chronic pain event, life with APD, Autism & Anxiety, and a new podcast on disability rights.
Check out our chronic pain event, life with APD, Autism & Anxiety, and a new podcast on disability rights.
Hello Spoonies 👋
Hope your week’s going great!
Our community has been buzzing with activity this week!
Even though our live event was just last night, I’m already looking forward to the next one!
If you have any topics you'd love for us to cover or know of any interesting guests you'd like me to invite to join us, just reply to this email and let me know.
I’d love to hear your ideas! ❤️
A big thank you to everyone who joined us for our live community event last night!
For those who missed it or want to watch it again, we’ve got you covered—we’ve recorded the event so you can enjoy it in your own time. ❤️
This week we're chatting with Grant from New Zealand. Thanks for sharing your story!
⭐ Are you neurodivergent, chronically ill, and/or disabled?
Neurodivergent.
⭐ What barriers have you experienced in making friends and connecting with people?
I have some friends. But these are only 1 or 2 good workmates or friends that share a common interest with me. I feel I am too friendly with people I don't know from the outset of meeting them. I don't enjoy the fact that I can ignore some for days, weeks, months then out of the blue just pop up.. but I also don't want to burden them with my day to day issues or over-crowd them with me messaging. I don't like making phone calls or having video calls and enjoy using social media/messaging instead.
⭐ What's been your favourite thing about Spoony?
To realise I'm not alone and not be judged. Making any attempt at starting a conversation on Spoony is difficult though (chats) so being able to post public messages about 'nothing' is appealing, with no fear of anyone commenting how stupid the post is or telling you that you're doing that thing you have posted about the wrong way.
Each week we'll spotlight a Spoony from our amazing community. If you'd like to share your story, we’d love to hear from you.
This week we’re chatting with a fellow Spoony about their Narcolepsy, which can be broadly defined as a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles.
❤️ How do you describe your condition to other people?
I explain my health conditions by being open and honest, but also keeping it simple. I usually tell people that I have ADHD and anxiety, and that I’m on the autism spectrum, though I’m currently undiagnosed. I focus on how these conditions affect my daily life, like my ability to stay focused, handle stress, or engage in social situations. I also mention that I’m learning to manage these aspects with strategies and treatments that work for me. I try to make it clear that I’m constantly growing in my understanding of my neurodivergence and what it means for me. Spoony!
❤️ What impact does your condition have on your daily life?
My health conditions have a significant impact on my daily life in a few ways. ADHD makes it challenging to stay focused for long periods, especially with tasks that require sustained attention or organization. Anxiety can sometimes make social interactions or decision-making feel overwhelming. Being on the autism spectrum, I sometimes struggle with sensory overload or interpreting social cues, although I’m still learning how to manage these experiences. These conditions often require me to implement specific strategies, like structure, routine, and self-care practices, to help me stay grounded and productive. I’ve learned to adapt, but there are days when I need extra time or space to recharge.
If you’d like to chat about your condition and share your experience with the community, we’d love to hear from you.
This week, I'm excited to share some fantastic content from a friend of Spoony—Carly Findlay!
You might remember Carly from our first live event, where she shared her experiences navigating life as a disabled person. If you missed it, you can catch the recording here.
Carly recently appeared on Access Granted, a podcast that puts disabled people at the center of discussions about socio-political issues impacting their lives. Hosted by Emma Myers, a Disability Rights and Political Reporter for the CBAA, this podcast is both enlightening and essential listening.
I highly recommend checking it out!
Until next week,
- Larissa