As a society, we are growing to be more chronically online every day. Our jobs, our relationships, and the way we enjoy music, writing, and art have all found a way onto our screens.
But for folks like myself navigating the ins and outs of living with the added nuances of chronic illness, the internet has become a lifeline for so much more than all of that. It has become an extension of our friendships, our caregiving, and our community.
Social media has become a tool for me to find solidarity among other people living with Type 1 diabetes, get tips for scar management for others who have had their thyroids surgically removed, and make grim jokes about what it’s like to wake up each day not knowing how much energy we’re going to be working with each day.
Not coincidentally, the conversational elements of social media platforms like Reddit and Twitter, plus digital media outlets, increase the number of spaces where people tell their stories and build communities dedicated to activism. A more connected world offers a myriad of stories to be told and to be heard.
From disability rights activism to abortion justice to abolition, the internet especially makes space for chronically ill activists to engage, advocate, and build community.
Chronically ill activists in community
The expansiveness of the internet offers people with chronic illness the ability to extend beyond the limits of physical form, bending time and space to create feelings of camaraderie, understanding, actual empathy, and models of care.
Chronic illness is a vast umbrella: According to the Centers for Disease Control and Prevention, almost six in 10 adults in the U.S. are living with at least one chronic disease. Four in 10 adults are living with two or more chronic diseases. The rates of chronic illness have increased significantly in the years of the COVID-19 pandemic and the disease’s impact on long-term well-being.
Even larger numbers of people in our country use social media; in a 2021 study, the Pew Research Center found that more than seven in 10 Americans use social media to connect with people, share information, and expand their social circles.
And the internet can make chronic illness feel less lonely.
“The exhaustion is the worst part. I’m so tired all the time,” shares Hayley McMahon, a public health scientist and advocate living with ADHD, celiac disease, and long COVID.
“At the very least, being able to commiserate with other people who are dealing with the same thing provides some comfort, and people also share resources, like potential options to talk with your clinician about or local pharmacies,” McMahon tells the Daily Dot. “They seem like little things, but it helps a lot when there’s nothing else you can do but wait.”
McMahon regularly makes waves on Twitter when she shares her research on misinformation around reproductive health care and that misinformation’s negative impact. She has almost 17,000 followers on Twitter and regularly shares viral posts sharing the science around abortion, birth control, emergency contraception, and ways to show up in a post-Dobbs world for members of our community.
The internet is a platform for many others whose illnesses or symptoms may impact how they can physically show up in traditional activist spaces.
Ash Williams is a Black, trans, chronically ill organizer and abortion doula with the Mountain Area Abortion Doula Collective. “I use the internet to make connections with people, to amplify my voice, to amplify the voices of people in my community,” Williams tells the Daily Dot.
Williams specifically uses Instagram and Twitter to amplify calls for mutual aid support for a variety of circumstances including but not limited to abortion funding, gender-affirming care funding, bail funding, and diaper drives. Social media expands not only who he can fundraise for geographically but the breadth of where he can get support from.
Recently, I watched as Williams’ social media followers fund a goal of $1,300 for a person traveling to New Mexico from another state for abortion care over the course of a couple of days. Every gift, no matter how small, made a massive difference in the life of this individual.
Sometimes, all it takes is a retweet to get people the funds they need to take care of themselves. And in a world where digital advocacy is so easily tied to the digital economy, all it takes is sharing a Venmo or Cash App username to quickly fill the need of the moment.
The internet allows for a sort of extension of the self. To be able to speak to people around the globe from anywhere, including the comfort of bed, is liberating for people whose bodies may be physically experiencing symptoms that are preventing them from showing up in traditional in-person advocacy spaces like protests or hearings.
“I think there’s a lot of power in digital advocacy,” McMahon says. “There aren’t many places where I can be simultaneously talking to 15,000 people about self-managed abortion, but on Twitter, I can do that.”
Activism begets activism
As people with chronic illnesses, we learn to be advocates for ourselves out of necessity. Those advocacy skills are easily extended to issue-area advocacy and justice spaces; activism for self begets activism for others.
For Eshani Surya, a writer living in Philadelphia who has inflammatory bowel disease (IBD), an autoimmune disorder where the body attacks the healthy digestive tissue, activists invited her into a deeper knowing of herself: “Disability advocates helped me shape my view of my disabilities and taught me that I could advocate for myself and others with IBD/other chronic illnesses, too,” Surya tells the Daily Dot.
The internet became a tool for information, for shaping our understanding of others, and for telling our stories.
For Kamaria Laffrey, an activist for HIV policy and decriminalization living in Florida, the internet of the early 2000s was a way to find healing after her diagnosis with HIV when she struggled to find support groups for people who looked like her.
“Living in the county I live in, no one that looked like me was talking about or being heard if they were speaking about HIV. Support groups I would go to were older white men,” she says. “As a newly diagnosed Black single mother, when I walked into that space, I was like ‘Oh no. This is not for me.’ It didn’t feel healing, it didn’t feel like what I needed. So I started to try to build something that looks like me, finding mentors and community.”
The internet changed that for Laffrey. As folks with chronic illness started using blogs and early social media platforms more robustly as a tool to find each other in the early 2000s, Laffrey used Myspace to share her diagnosis and to share her truth as a Black woman living with HIV.
“It was February 7, 2007 … I was terrified, I’ll be honest,” Laffrey says. “With social media, there’s weird transparency there, so if people want to say something mean, they’ll say it. And what ended up happening was this outpouring of love. Folks coming to me saying ‘I had this relative and that friend and thank you because nobody talked about it when I lost this person.’”
Laffrey’s early adoption of social media became integral to how she operates in HIV activism spaces. Today, she uses Instagram, Facebook, and Twitter to organize support groups and education spaces for people living with HIV and continues to share her story.
Social media has become a vessel of support not only for people living with chronic illnesses to receive support but also for a better understanding of their conditions.
For Surya, “Finding chronic illness communities has been vital.” The internet helped her find the actual language and information to name what she was experiencing. “When I was first diagnosed it was a helpful tool for finding language around my experience,” she explains. “The internet is the first place where I learned to call myself ‘disabled’—because that’s what I am.”
Chronic challenges remain
Chronic illness can be isolating; it can be heavy to live with a condition that isn’t going anywhere. And the depth of that fear, the complicated dance of balancing acceptance while navigating the day to day living with various physical, mental, and emotional symptoms, is best understood by other people living with chronic illness.
Chronic illness is often an invisible disability, meaning that at first glance, one might not know that someone isn’t feeling well, whether at home, at work, or out advocating.
“For me, as a Black woman, even going to the provider and trying to explain the pain I’m in or symptoms I’m experiencing, if it’s not visible or if I’m not in tears, it’s not real,” Laffrey says. “But then I feel this incredible magic when I’m around my community, when I’m with other patient advocates, other people living with HIV, other folks with chronic illness. There’s just something you can talk about that doesn’t have to be explained. You just get it.”
Williams says that chronic illness, as an identity that is often overlooked or misunderstood socially, offers perspectives into activism that challenge some of the white-supremacy culture like urgency and pace that has seeped into organizing and activism.
This ability to center self-determination and collective care has a ripple effect on all communities that activists are fighting for—including able-bodied folks. As able-bodied people have opportunities to listen to and interact with more people with chronic illness, they should remember to listen to chronically ill folks’ expertise.
“My chronic illness impacts the way I work with other people and it allows me to understand what it means to fight for the self-determination and collective liberation of all people,” Williams says.