@wildcircusbilly I'd definitely agree w/ that. And there IS a ton of evidence and data on that as per Breast Cancer and the "pinkify-ing" of items. The same w/ Autism "awareness".
For smaller conditions that do need some measure of awareness, there are still concerns within subcommunities.
For smaller conditions that do need some measure of awareness, there are still concerns within subcommunities.
@wildcircusbilly The first issue, whether small or known conditions, is how quickly MISinformation spreads. If it's got a hashtag or graphic, people assume it's true, then share.
This is even worse when abled parents or loved ones explain someone else's illness FOR them. Bc 'awareness'.
This is even worse when abled parents or loved ones explain someone else's illness FOR them. Bc 'awareness'.
@wildcircusbilly Sometimes they may even get the info correct but felt entitled to share about a loved one's illness before even asking them.
For those sharing their own experiences people still assume everything they're saying is true. And the correction NEVER gets the same exposure as misinfo.
For those sharing their own experiences people still assume everything they're saying is true. And the correction NEVER gets the same exposure as misinfo.
@wildcircusbilly Most awareness campaigns for smaller conditions are literally just recycling the same info amongst that community. It rarely reaches stages. Most either have it or are friends with whoever's sharing. We're all aware.
It's exhausting to be reminded of your illness ALL month.
It's exhausting to be reminded of your illness ALL month.
@wildcircusbilly There is also PRESSURE to post. To do something unique or eye catching or informative. Those that want you to post daily for a MONTH are just trying to maximize exposure for their own org. It drains those who are sick. They, the patient, RARELY benefit.
@wildcircusbilly Theres also *competition* that breeds. Who has what worst, who's the sickest, who has the most extreme photo, who lost the most loved ones to it, who had the most nightmarish journey to dx, whose story will get the most likes.
It becomes tragedy p*rn and disability Olympics.
It becomes tragedy p*rn and disability Olympics.
@wildcircusbilly Everyone is expected to cough up their suffering for others consumption and feel bad if they can't. (Note all the apologies that come if someone can't.)
If you have multiple conditions that fall in the same awareness month?? Yikes dot com. And many of us do.
If you have multiple conditions that fall in the same awareness month?? Yikes dot com. And many of us do.
@wildcircusbilly Once again the responsibility falls on the sick individual to do the work and educate, not those who should seek out the already-available information.
It's exhausting and rarely achieves the intended reach. We're all just talking to and supporting each other. We're all aware.
It's exhausting and rarely achieves the intended reach. We're all just talking to and supporting each other. We're all aware.
@wildcircusbilly I'm sure are dozens more concerns but this is just off the top of my head. But when it comes to larger organizations, campaigns, runs, products, ribbons, etc, we get into an entirely new bag of toxicity and profiting from pain.
Some are good, most have problems.
Some are good, most have problems.
