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 Marissa from Australia!
Welcome to Spoony Stories ❤️🥄 There's nothing better than getting to know some of the wonderful people in our community, and learning a bit more about their experiences with neurodivergence, chronic illness and disability.
This week, we chat with Marissa from Australia! She shares about living with multiple complex chronic illnesses, what she's been up to on Spoony, and so much more! Thanks for sharing your story! ❤️
Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill and disabled.
What health conditions do you have?
Sjögren’s syndrome, Chronic Kidney Disease, Pulmonary Embolisms (PE), Depression and PTSD.
When I was 16, I was constantly missing school because I was sick. I knew something wasn't right with my health. After extensive testing, I was diagnosed with Sjögren’s syndrome, which usually affects women in their early 40s. I was 21 when the damage to my kidneys was discovered. It was worse than first suspected and I was diagnosed with stage 4 Chronic Kidney Disease. In 2020, I had my first PE and had to spend time in ICU. Last year, I spent a lot of time in hospital with six admissions and experienced my third PE.
There is very possibly more, but my brain fog is getting the best of me today.
How do you explain your health conditions to other people?
I explain that my immune system attacks itself and is so busy doing that that it can’t fight infections.
What impact do your health conditions have on your daily life?
I have Sjögren’s syndrome and it’s affected me since I was 16. I also have stage 4 Chronic Kidney Disease that was discovered when I was 21. More recently, I’ve spent a lot of time in hospital after experiencing repeat and recurrent pulmonary embolisms. As a result of my health conditions, I’ve had to reduce my daily activities and I suffer from brain fog, constant pain and anxiety.
What barriers have you experienced in making friends and connecting with people?
I can’t leave the house much because there’s too much of a risk. I’ve lost a lot of friends because many people don’t understand when I have to cancel plans at the last minute.
What's been your experience on Spoony so far?
Spoony is a safe space for me to talk to people that understand. I can’t share much on my private socials and Spoony gives me an outlet.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.