Sahara Fleetwood-Beresford | Patient Advocacy

Inflammatory bowel disease, ostomy, chronic pain, PTSD, and mental wellbeing.

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Tag: Digital Media

25th Jul 201927th Mar 2023 Sahara Fleetwood-Beresford

It’s official – I’m a writer now!

5th Jun 201927th Mar 2023 Sahara Fleetwood-Beresford

Contributing to improving care for IBD patients

1st May 201824th Mar 2023 Sahara Fleetwood-Beresford

Best IBD awareness hashtags to use!

It took me seven years after my #UlcerativeColitis diagnosis to finally talk about the emergency surgery, the sepsis, and the complications that followed. When I started sharing in 2014, I was doing it from a place of anger because I was tired of being misjudged. At the time, I didn't have the language for the grief I was carrying, and even the word "feelings" made me cringe. Not much of a roasting 😂😂 I'd love that! 🌿 Grief is a word we usually associate with losing someone, but when you are diagnosed with a lifelong #ChronicIllness, you are grieving too. You are grieving the loss of your healthy self, the person you were in your best memories, and the future you thought you would have. Don't worry, I haven't gone to the "dark side" 🙈 Having to fact-check everything you see online really sucks. There's a big disappointment in feeling inspired by a story or a cute fact, only to realise it was fake, AI-generated bullsh*t. Whether it’s a heartwarming celeb story that never happened or a perfect AI animal, the lack of digital authenticity makes the internet a weird place! I am currently layered up like an onion, because my nervous system does not like winter! 🏳 Study morning 📖🖊 When I first looked for information on #Pregnancy after bowel surgery, I found plenty of clinical statistics, but very little that felt real. I wanted to know what it actually felt like in a body like mine, with seven surgeries and a complex history. It looks like ChatGPT thinks I'm a psychologist 😂 Remind yourself who the Fuck you are today. You are good enough! ✨ When we live with #Crohns, #Colitis, or #Fibromyalgia, we are experts at the physical talk. We can list meds and explain a #Stoma without blinking, but the mental toll is often much harder to put into words. Just a quick update in response to the comments on the previous post asking people if their sensura mio was behaving! I had a lot of comments recommending things, so I just want to clarify, I'm not looking for additional products. IF something has changed in the manufacturing process or the adhesive, then I'll obviously need to shop around for a new bag, but it was just a manufacturing error that is not ongoing, then there's zero need.
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