In the first decade or so of the existence of social media, many of us chronically ill people thought we had finally found a safe place to build community among ourselves. But these days, using social media and other online forums as a chronically ill person means gambling with your personal safety. Each chronically ill person must decide for themselves if the benefits outweigh the risks. For me, I no longer feel that it's safe.
When I first got on the internet, it was 1996. I was a heavy user of online social forums up until about 2016. During those twenty years, the internet, particularly social media platforms, enabled me to find others with the same experiences of chronic illness as myself. We've been able to share support and resources with one another that many of us would not have access to without internet platforms. I still appreciate those methods of connecting, but in 2016 I began to realize that using the computer in general and social media in particular had begun to be more detrimental than helpful or useful to my chronic illnesses.
There is some discussion about the negative impact of social media on mental health, but there's little acknowledgment of how technology use can exacerbate other symptoms. For example, looking at screens worsens my eye and head pain; using handheld devices worsens the conditions in my neck and hands; lying down and sitting to type aggravates my hips, back, pelvic floor, and torso; and relying on technology that allows me to perform searches (search engines, browser history, calendar events, document location, etc.) has intensified the severity of my memory impairment. I'm not the only person who has experienced their chronic illnesses worsen with over-use of social media; I know many, most of us over the age of 35, who have the same issue. This, onto itself, is an obstacle, because social media and other online platforms are generally where communities for chronic illness can be found — especially in the COVID-19 era, there's little in-person community for those of us with chronic illness.
Then there are the social difficulties of being "out" as chronically ill on social media. This can lead to getting doxxed and then reported to agencies such Social Security for "fraud." It can also lead to a nasty form of bullying where other social media users gang up on chronically ill people to accuse them of "faking" their health impairments. In recent years, a bunch of Reddit forums (subs) have been created with the sole purpose of singling out chronically ill social media users to "investigate" their health status. Images and statuses are copied from social media and then uploaded to these subs, where complete strangers then analyze the user-posted content to look for "proof" that their targets are not chronically ill. The personal stories we share on social media are gathered in other ways, too.
The information that we share about our health on these platforms and forums gets aggregated and sold to data brokers who sell the information to third parties. Right now, those third parties can be potential or current employers, ad agencies, financial institutions, and more. One day, government benefit offices such as Social Security and state-run Departments of Social Services may start buying this data, which could then be manipulated to be used against our eligibility for disability and disability-related benefits. In 2019 the Social Security Administration announced that it may start using the content of our social media accounts when deciding on benefit cases. The following year, a proposed Social Security budget said that Social Security was planning to expand the inclusion of our social media content when considering applications for benefits.
Every user of social media and other online forums needs to realize and remember that the content and personal information we share is not safe from being seen/read by others. Data is aggregated not just from the content of public accounts, but also the content of one-on-one chat functions and private (locked) accounts. Everything we share can be shared without our consent, whether by screenshot, forwarding, or data aggregation.
Everything on our accounts is fair game. With some social media platforms such as Facebook, even when we "delete" our posts or account, they still keep our data for months after deletion and they keep the logs of our account use permanently.
And everything we have already posted? It's already been aggregated (sold) to data brokers.
Follow the Electronic Frontier Foundation (eff.org) for coverage of the American Data Privacy Protection Act (ADPPA (H.R. 8152)) and other information about internet privacy.
You can't get your data back, but you can stop giving them more of your private information.