It started on YouTube. There's a prominent cystic fibrous vlogger who vlogs daily- Mary Frey. She's quite popular among the "Spoonie" community. Then came Chronically Jaquie. She started the daily vlogging thing too and seemed to copy Mary routinely. Jaquie started pretty tame but quickly collected more diagnoses and more "tools:" a port, wheelchair, GJ tube, then separate g and j tube (before trying an NJ!) with the covetted Kate Farms formula, then AFOs and a whole exoskeleton worth of braces, IV ketamine on the regular, medical marijuana, Dilaudid, unlimited IV push Benadryl, etc. To tell you how ridiculous she is she now says she's getting an AV fistula. For IV access. For fluids.
Now it's a trend. There are hundreds of people just like this on Instagram and Youtube all exactly like you describe. Feeding tube but clearly able to eat. Ports for no good reason. Only Kate Farms formula. Wheelchairs with power assist, pimped out and styled to their preference- but perfectly toned muscles. It's really bizarre.