People Are Using Instagram To Show What It’s Like To Live With Chronic Illness, Trauma, & Disability

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According to the National Health Council, 40 million Americans suffer from one or more chronic conditions that alter and affect their limitations of activities. Chronic illnesses can lead to further health concerns like depression and anxiety, and vice versa, and researchers at Yale have found that childhood trauma can even lead to chronic illnesses because of the release of inflammatory stress hormones during trauma-inducing incidents. Despite a recent study in the UK which found that Instagram is the most detrimental social media app to one’s health, some Instagram accounts are opening up the platform to address what it's like to live with chronic illness, trauma, and disability — in a real, unfiltered way. On an app infiltrated by memes and models, a bit of honesty, empowerment, and intersectionality is needed — and noticed.

“Social media can be tailored towards your liking,” Hayley Small, creator of the online community Lutte Collective, tells Bustle. She adds that you “just have to find the right community, and if you can’t find it, you can create it.”

Social media can serve as an area for community gathering and communal discussions. As clinical psychologist Judye Hess, Ph.D, was quoted in PsychCentral, “Group therapy can be more powerful and mutative than individual therapy.” Discussing similar issues can be useful for someone seeking recovery with mental health problems. Group therapy is often a recommended form of treatment for individuals with particular conditions as it provides a sounding board, helps propels ideas forward, provides support, and furthers the healing process. The internet, particularly social media, can function as a similar form of therapy or community.  

Lutte Collective addresses the experience of living with chronic illness through images, takeovers, and coverage that allows an individual to post stories that are genuine, sometimes heartbreaking, but imperative to recovery. Small has ulcerative colitis, a chronic and incurable illness that triggers anxiety and depression. (She is also the arts editor of The Le Sigh, a website that highlights women and nonbinary artists.) Lutte is based around a “collective” structure which encourages followers and users to connect and create a dialogue around through comments and DMs.

Small explains that the Instagram community seems largely exclusive, like a “cool girls club” — and that's OK. She says that “the disabled and chronically ill don’t get the spotlight for being cool the majority of the time.”

“Lutte is a safe space and a collective for artists that want to share their experiences, stories, and art, but maybe feel excluded from other communities because having a disability isn’t seen as cool or sexy," Small says. "But we are cool and sexy. Lutte is for anyone who is a woman or nonbinary artist that has a disability or chronic illness, diagnosed or undiagnosed. This includes mental illness, eating disorders, and substance abuse and recovery.”

Cate Stuart, the admin behind Ho_Pics_Heal, tells Bustle she grew up in an “unstable and violent home” while also “being the victim to several different kinds of abuse from romantic partners” from adolescence on. Her Instagram account embraces sexuality and the body as a means of healing and coping from trauma, racism, and misogyny. Images on the account include submissions, typically nudes, from individuals who edit their pictures on Instagram with text that applies to trauma, abuse, illness, misogyny, racism, and transphobia.

According to the University of New Hampshire Psychological and Counseling Services, empowerment, connection, validation, close relationships, and close community are all at the core of treatment and recovery. Why not allow online communities, like Instagram, to serve as a platform for restoration and healing? UNH advises telling others about your trauma and to make sure the person, or people are “safe people, people who would not hurt you, and who understand that what happened to you is serious.” For many people, the internet is a way to connect to people who live states or countries away — it’s an easily accessible source for those seeking connection and a way to bridge similar stories. “I am so here for social media,” Stuart tells Bustle. She supports the idea that social media can “100 percent be a vehicle for healing and for creating a community.” While traditional programs and treatment make use of a building, often with a circle of chairs, and a meditator, not everyone has access to certain types of facilities. And although Instagram is in no way a substitute for more serious or long-term treatment, it is establishing a community for folks who struggle to be recognized outside of these platforms.

“One of the things I love about Instagram is its way to connect people and to educate," Stuart says. "I'm not here for performative allyship through basic sharing of intersectional memes, but I do think the pure exposure to more radical left and anti-racist information can only help with dismantling misogyny.”

And now is the perfect time to begin that process of dismantling. When asked where she sees Lutte going in the future, Small says it is in a “transitory state.” She explains: “I want to continue to grow the community right now. I want to attract diverse people with diverse backgrounds and conditions. When we have a larger community, I’d like to continue the Instagram takeovers. I’d also like to curate a gallery show in New York that includes members’ artwork. I think all of this — the community, the creation of art, and displaying your art (whether online or in person) is all very therapeutic and cathartic.”

Stuart says, “My main goal is for the page to just be a place where people can be themselves, can admit to their traumas, can work on breaking down white patriarchal ideas of beauty, and to connect with others.”  “Also, to show off top notch nude pics of all kinds,” she adds.

Instagram, and other social media platforms, capture our everyday experiences. But these accounts are creating a relic for healing — a window into the past in order to better our future. “Being honest on the internet is so incredibly radical,” Small says.

Platforms like @Lutte and @Ho_Pics_Heal are traversing the corners of the internet to create safe and meaningful spaces for individuals to creatively and honestly display their emotional responses, setbacks, and successes as a way of healing.