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Shrinking the Silence

Sharing a voice on living with rare disease

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F R I D A Y! I can’t believe I’ve now been working from home for 3 weeks. I’ve also had to process this week that 2 procedures I need to get done have been pushed back because of COVID-19. Completely understandable, but nerve wracking nonetheless when it involves pre-cancerous polyps. It’s the little things like brightening up my living room with flowers that is keeping my spirits up 🌻 ☀️✨#covid19 #chronicillness #familialadenomatouspolyposis #bowelcancer #cancerprevivor
Escaped to the beach for some fresh air tonight 🙌I’ve started working from home which has made me feel much more comfortable as someone with chronic illness in COVID-19 times, but only day 3 in and I’m missing the incidental outdoor time that comes with going into an office. Feel ready to tackle tomorrow ✨✨#arsedrag @arsedrag #selfcare #chronicillness
#themarchcharge must continue in the rain ☔️ with a bush walk - quite an #arsedrag for my body that’s still tired from a fitness session on Friday @arsedrag @themarchcharge
About 3 years ago I started my blog, Shrinking the silence, with my Instagram account (@shrinking_the_silence) coming a year or so later. In my first ever post I wrote about about my inspiration for the blog and reflecting over the years I’ve been writing, it’s done that and so much more! Here’s a snippet of what I wrote: “Many rare diseases are not widely talked about or known about, yet there are lots of people who live with them every day. I’ve found that at times because you don’t hear a lot, it can be isolating and there is a lot of silence on information and finding common experiences. So by sharing more, I hope to shrink the silence and have more stories shared and found online….shrinking is also in relation to my hope for my desmoid tumour to continue to shrink!” #desmoidtumor #familialadenomatouspolyposis #raredisease #chronicillness

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ampulla breakup cancer Chemo chronic illness Desmoid tumour diagnosis empowered Familial adenomatous polyposis family FAP hair hair growth Hair loss Ileostomy invisible illness J-Pouch jpouch nurses oncology pixie cut polyps Proctocolectomy Rare Disease Rare Disease Day relationship Relationships scars surgery travel Wig work young patient

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