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 Zaniyah 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 Zaniyah 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?
Endometriosis.
I was diagnosed with stage four deep infiltrating Endometriosis when I was 23. I've been struggling with it since I was 13, but I just convinced myself that my periods were normal, even when they took me out of school because the pain was so bad that walking to my classes was almost impossible without an accident. I was 16 when I first started birth control after I went to gynecologist for help with my pain. I stopped taking it because the terrible side effects made my life even more difficult. At 19, I went to the hospital after a month of non-stop pain, only for surgeons to tell me that it's appendicitis. They found an ovarian cyst and sent me back to a gynecologist who only did a regular ultrasound as if I was pregnant and told me I was fine. After being hospitalised multiple times, I found out my Endometriosis was so bad that I basically had it from the neck down and had several surgeries to combat it.
When my family and I all got sick a few years ago, I became severely unwell and had to be hospitalised with lung issues. So I’ve been dealing with my lungs constantly collapsing on top of everything else.
How do you explain your health conditions to other people?
I explain that Endometriosis is a chronic illness. People only assume it's reproductive based but it’s much more than that.
What impact do your health conditions have on your daily life?
I have stage four Endometriosis. It causes fatigue, shortness of breath and pain. It’s affected me since I was 13, but I just convinced myself that it was normal. My life started revolving around trying to live around my period. For one week out of the month, I couldn't do anything - I couldn't eat because I couldn't even keep water down and I couldn't sleep because I was worried I'd wake up in a mess. I was taking lots of different medicines, but nothing helped. It got to a point where I was in constant pain for three weeks out of a month. I've had quite a few years of surgeries to combat my Endo, but it's still hard to manage. I'm also dealing with lung issues, specifically my lungs collapsing, after a severe illness where I was hospitalised.
What barriers have you experienced in making friends and connecting with people?
It can be hard. But thankfully I’ve made friends with empathetic and understanding people.
What's been your experience on Spoony so far?
I love how everyone on Spoony is so kind and understanding because they get it.
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.