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 Poppy from Australia!
Welcome to Spoony Stories ❤️🥄 We adore our lovely community on Spoony! It's such a joy getting to know some of the lovely people who make Spoony so darn wonderful and learning more about their experiences with neurodivergence, chronic illness and disability.
This week, we've been chatting with Poppy from Australia. She shares about what it's like to live with rare health conditions, her experiences having invisible disabilities and how Spoony has made a big impact in her life! ♥️
Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill and disabled.
What health conditions do you have?
CSID, Osteopenia and medical PTSD
I also suspect that I have POTS and EDS.
How do you explain your health conditions to other people?
I always like to explain invisible disabilities to other people. I let them know that even though I may look fine, it doesn't mean that I am fine.
What impact do your health conditions have on your daily life?
I deal with severe fatigue and often don't have the energy for daily chores like making my bed. I can't leave the house to do fun activities, let alone manage a job or studies. I'm on an extremely restrictive diet, which means I can't eat my favourite foods. I struggle with knowing that I am enough and I am worth it because of trauma around my health conditions.
What barriers have you experienced in making friends and connecting with people?
Holding onto friendships is tough when I have to constantly cancel or reschedule plans because of how unwell I am. Some people don't like that I have to revolve my whole life around my chronic illnesses. In the past, I have received judgement for not constantly improving myself and being down all the time, when in reality, I’m doing my best and am actually quite positive!
What's been your experience on Spoony so far?
Spoony gives me hope that I can find people out there who I can connect with and who are like me. It's helped me realise that I shouldn't be ashamed or feel like I have to hide my situation.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.