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A few years ago, Ali DiGiacomo was shocked to discover her face on a Daily Mail article called ‘Addicted to being sad: Teenage girls with invisible illnesses – known as ‘Spoonies’ – post TikToks of themselves crying or in hospital to generate thousands of likes – as experts raise concerns over internet-induced wave of mass anxiety.’ Aside from the fact that Ali was not a teenager, they had used her post about self-injecting rheumatoid arthritis medication (which had amassed 15 million views) as proof that spoonies on TikTok were using their illnesses for likes, encouraging each other to lie to doctors to get the diagnoses they wanted and competing to see who was sickest. (We have not linked to the article to avoid driving traffic to this post.) At first, Ali thought the whole thing was a hilarious misappropriation of the truth. That changed when the negative comments started rolling in, disparaging herself and the other chronic illness warriors whose intentions were being defamed.

In this episode of the Major Pain podcast, Ali shares the ups and downs of her chronic illness journey while recounting her reaction to the Daily Mail ordeal. Ali lives with chronic pain from both rheumatoid arthritis and a mysterious nerve pain in her chest, which she describes as “drop to your knees pain” that “feels like a heart attack.” At 31 years old, she has now been in chronic pain for about 10 years. Still, she has managed to travel the world and work as a personal trainer. She describes how chronic illness has shaped every aspect of her life, impacting her work, relationships and identity. Sharing her journey on social media was born from the need to connect with people her age going through something similar, and has resulted in a huge community of spoonies lifting each other up in spite of chronic pain.

Find Ali online at https://www.anotherdaywithra.com/

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
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AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
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NEURAHEALTH: https://www.neurahealth.co/majorpain