It was years of personal experience condensed in fewer than 280 characters.
“If you’re undiagnosed and you have a history of casually lying down on the bathroom floor to recover from a bath or shower, I really encourage you to learn more about POTS and/or dysautonomia,” Brianne Benness, 35, tweeted in late 2020, two years after she started hosting a podcast about chronic illness. Simply standing upright can rapidly increase the heart rate of people living with postural orthostatic tachycardia syndrome, a blood circulation disorder, and make them dizzy to the point of fainting. Yet getting a diagnosis can take more than five years, on average.
By putting their bathmat use into words, Benness helped several of her followers identify a characteristic symptom, even leading some to get a diagnosis.
In fact, after years in medical limbo, Twitter had pointed Benness herself to the right specialists to help with her condition. Twitter was also where James Berg first realized he had ADHD, where Stephanie Tait raised money toward her treatment for advanced Lyme disease, and where Jaime Seltzer raised awareness about her chronic illness by connecting with patients, scientists, journalists, and advocates.*
For years, the platform has been a locus of community for people with disabilities and chronic illnesses, where they found mutual aid opportunities, solace in virtual social connections, and an accessible space for advocacy. Swapping medical information about symptoms and diagnoses through tweets may not be ideal. But for many chronically ill people, relying on other patients’ insights is far from the “woo-woo” reputation online health advice often gets. It is a way to fill gaps in an also far from ideal U.S. health care system, where specialists are scarce and many of these conditions are not featured in medical training. Information from “disability Twitter” can help someone come prepared for their next doctor appointment.
Moreover, it can let them know they are not alone with their symptoms, and validate their experiences when a battery of doctors has failed to do so.
Now that users are deserting in protest of Elon Musk’s acquisition of the platform, his plans to sell out blue checkmarks, and his disdain for content moderation, many are dreading a proliferation of disinformation and hate speech, and fear for the future of disability Twitter.
“I lack the eloquence to even convey how much the community here means to us,” said Berg, a self-described “gaming nerd” and user experience researcher from Canada who focuses on improving the accessibility of video games for disabled people. “Not just as a way to learn and share, but as a support network.”
Amid the uncertainty on the future of the platform, users disagree on what to do next.
Some plan to stick to Twitter for as long as they can. Others are scrambling to find alternative platforms, reactivating old Discord accounts or trying to make sense of Mastodon, which has drawn more than 489,000 new users since Musk took over Twitter on Oct. 27. Many fear that any replacement for the old Twitter—or replacements, if people scatter—will come at a cost for the disabled community.
“Mastodon, which seems to be the darling of Twitter expats, is not as accessible in terms of the system’s technology,” said Eric Bailey, a designer, developer, and a member of the A11Y project, which aims to make digital products more accessible. In past years, Twitter had implemented several new features, including the option and reminders to use alt text (descriptions of images for visually impaired people). The accessibility team also added auto-captioning support on Twitter spaces, and a dark mode to reduce strain on the eyes. On Mastodon, Bailey explained, the accessibility features are not centralized and can differ depending on which sub-server a user joins. Each has its own code of conduct, moderation policies, and accessibility options. Some users attempting to switch to Mastodon reported barriers to the use of screen readers, for instance.
“Twitter was pretty much my home,” said Shay Baker, a 24-year-old accessibility consultant who is totally blind. She said that unlike many other platforms, Twitter allowed her to “get my thoughts out there in five clicks.”
Then earlier this month, the entire engineering team of Twitter’s accessibility experience was let go. Calls to hire them elsewhere quickly abounded on the platform as accessibility specialists denounced the step backward. Although the platform’s accessibility practices haven’t changed yet, several users are already beating a retreat. “I will probably not be on here as much as I have been. If you’d like to keep in contact, let me know,” Baker told her Twitter friends.
Losing Twitter could also mean losing the serendipity and reach that a platform with 450 million monthly active users offered.
In 2020, Benness, who hosts a podcast about life with chronic illness called No End in Sight, launched the hashtag #NEISvoid for people to crowdsource, ask questions, or just vent. “Yes, it’s okay if your question is ‘In a flare, send cat pics?’ ” her website states. She retweets all of them, to make sure that “people could shout about being sick, and have people shout back,” she said.
The pandemic only exacerbated the need for this online social lifeline, as many immunocompromised people were—or are still—homebound. Benness says she combs through almost 100 #NEISvoid tweets a day. It’s a way to encourage connection.
Twitter also offered activists insights into the changing landscape of chronic illness during the pandemic. Long before doctors started getting a grasp on long-haul COVID, Seltzer recognized signs of post-viral chronic illnesses in some users’ tweets. Seltzer has lived with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, for years. She learned the hard way that pushing herself, physically or mentally, would cause her symptoms to flare up and could have dramatic consequences on her health.
“When people started saying ‘When I push through, I collapse,’ I knew what it meant,” Seltzer said.
While patients were coining a name for long COVID, she and the advocacy group MEAction, where she directs scientific and medical outreach, started drafting a “pacing” guide to teach long-haulers how to manage their energy levels and avoid crashing. At the time, “Twitter was the only place they could find that information,” Seltzer said. “The patient community became a frontline public health service.”
By logging off Twitter, the community could shatter to pieces, leaving people “siloed by diagnosis,” warns Tait, a 37-year-old disability consultant from Oregon. In that scenario, undiagnosed people would find themselves doubly isolated, Tait added, by the pandemic and then by a lack of robust online community. Her own diagnostic journey, from “it’s in your head” to “advanced Lyme disease,” lasted more than 15 years and left her with permanent cardiac and neurological damage.
Now, for nearly two years, Tait said, she has watched from afar as the world “moved on and returned to ‘normalcy’ with little regard for those who couldn’t.” Unable to leave her house safely, or to send her two kids back to school, she started to feel like “people think COVID only still exists on Twitter.” It seemed to be the last corner where people worried about sanitary precautions and masking, followed the latest virus surges, or understood the mental toll of still isolating when most people no longer do.
She found proof of that disconnect when some users laughed off the news that the platform might not survive Musk’s acquisition, and encouraged people to “go out and touch the grass” instead. “You don’t think we desperately want to?” said Tait.
To her, Twitter stood as a reminder that people who cannot choose to live their life ignoring the effects of the virus still exist, and allowed them to have a virtual voice, if not an in-real-life one. Losing it, she said, would feel like “losing the last thread that connected us to the rest of humanity.”
Correction, Nov. 14, 2022: This piece originally misstated that Stephanie Tait raised $13,000 on Twitter. Some of that money came from her friends and family directly.