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 Leo from the United Kingdom!
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Welcome to Spoony Stories ❤️🥄 We love our wonderful community on Spoony! It's so lovely to get to know some of the people who make Spoony so magical and learning more about their experiences with neurodivergence, chronic illness and disability.
We've been chatting with Leo from the United Kingdom. He shares about his struggles with friendship, what he's liking about Spoony, and much more! Thanks for sharing your story! ❤️
Are you neurodivergent, chronically ill, and/or disabled?
Neurodivergent.
What health conditions do you have?
Autism, Sensory Processing Disorder, POTS, IBS, and chronic constipation. I also possibly have Endometriosis or PCOS.
How do you explain your health conditions to other people?
I don't really have to explain my Autism to other people because I mostly spend time with other Autistic and neurodivergent people. I do have to explain POTS to people quite often. The simple way I describe it to people is that sometimes I faint when I stand and walk. The more detailed way I describe it to people is that my heart rate goes up too much in a short amount of time after doing certain activities. This causes me to faint, near faint, sweat, feel weak, have headaches, feel lightheaded, get dizzy, and lose my hearing and eyesight before I faint. I feel worse on days when I'm sick or it's hot outside because heat and illness aggravate my symptoms.
What impact do your health conditions have on your daily life?
POTS affects me throughout the year, but it's the worse during summer. I always bring a water bottle with me and make sure to eat before going out. When I go shopping, I usually have POTS episodes and it often happens if I'm standing still. I stay in bed when I'm sick because illness makes my symptoms worse. My POTS symptoms were aggravated the most when I used to have periods. I would faint multiple times in a row because my heart just wouldn't regulate as well while I was on my period. In more recent years, I've become quite good at monitoring my symptoms, pacing myself and dealing with flare ups on my own.
What barriers have you experienced in making friends and connecting with people?
I struggle a lot with connecting to others because of my Autism. Some people think that I'm rude and non-feeling because my tone is interpreted as blunt and monotone. All of my friends and partners have been Autistic or had ADHD. Socialising takes a lot of mental energy for me, I can't handle talking or texting someone every day without a break. I just don't want to talk every day but for some reason, other people think it's rude. At the moment, I'm finding it hard to make maintaining relationships less draining for me.
What's been your experience on Spoony so far?
It's so easy to find other people with the same conditions and interests as me. I much prefer Spoony to other social media platforms because the posts are genuine and not made just for likes and attention. I also really enjoyed customising my profile!
Each week, we share stories from the incredible Spoony community in our newsletter, podcast, and on social media. Share your story with us.