Dismissing the Stigma of Internet Friends
A couple years ago I went through some, shall we say, darker days. Who hasn’t? But, I don’t want to talk about those days because that isn’t what this is about. Instead, this is about how I bloomed out of them with a bunch of new and unexpected, brilliant and beautiful friends — even with a chronic illness and courtesy of the internet. So yeah, let’s just chat about that.
It’s late on a warm Saturday afternoon and my friend Izzy and I are sitting on my apartment stoop looking out at two palm trees leaning in towards each other like lovers against a soft pink Oakland sky. Fast friends before my move from San Francisco to the East Bay, Izzy and I met IRL (in “real” life) through a mutual friend (hi Claudia!) the way many people, you know, meet other people. But there is another way — a relatively new and radically important way — that folks today find their friends, discover their supportive and/or niche audiences and connect with kindred spirits: the World Wide Web.
There are those who are quick to dismiss the idea of an active online life and the concept of internet friends. It’s my hypothesis that these people have never had a very active online life or very many internet friends, and this fact is due in part to privilege. After all, it’s easy to disregard something when you haven’t had a reason to take it seriously because it hasn’t affected your life in a serious way. But for many members of marginalized communities, including but not limited to: women, people of color, disabled folks, LGBTQI+ identifying individuals and the chronically ill, online spaces can be a rare and incredibly impactful, even life-saving sanctuary.
Social [media] apps such as Twitter or Instagram share common ground with any other area where individuals socialize, in that they are all places where people with common interests can come together to mingle, converse with one another, discuss relevant topics, problem-solve and make memes about the issues that impact their collective communities. My own favorite corners of the internet include those inhabited by women and people who ID as gender nonconforming, pop culture and astrology fans, spoonies and devotees of Robyn Rihanna Fenty.
During those aforementioned darker days, I had isolated myself in a small and overpriced but relatively quiet San Francisco studio (have I mentioned I’m a Virgo? Sagittarius moon and Sag rising for the astrology bbs out there. DM for my birth chart). My health was suffering and my heart, fucking, hurt. I was 29 and 10 years earlier at 19 during the summer after my first year of college I was diagnosed via laparoscopy with a chronic illness. Also called endo, endometriosis is a condition where tissue similar to the lining of the uterus is found in other areas of the body (like the abdominal wall or the ovaries).
Before we go any further I want to take a moment to remind you that a person does not have to identify as a woman to have endometriosis (example: trans men and gender nonconforming people can have endo too). It is crucial as the conversation expands around endometriosis that we include all individuals in the dialogue of this disease, not just those who are cis and woman-identifying. However, because of things like the media’s consistent centering of cis women and to endo being commonly regarded by society as a “woman’s disease,” this illness with no known cure (that’s the chronic part) has been met with a cruel lack of awareness and funding.
Now stay with me. This means that with the very limited U.S. government dollars dedicated to research, we have very limited knowledge about a cure, or even definitive known causes although theories do exist (retrograde menstruation or simply you’re born with problematic HOX genes, sry). I think the 1 in 10 women — and all others with endo who don’t identify as women — who thrive and survive every day alongside this annoying ass illness deserve better than this.
In a nutshell, the symptoms of endo range from relatively temporary cramps and nausea to relatively permanent scarring and infertility. Other symptoms include painful sex, blood clotting, digestive issues and bloating. I know, sexy. My symptoms usually manifest as fatigue, a nauseated stomach and hellish cramps that pulse and jab rudely through my abdomen and back. This is why I keep an emergency barf bag with me in my backpack — for those unfortunate, unavoidable and embarrassing occasions when my symptoms hit and I’m out in public, like that one time on the outbound N Judah MUNI train after work one day. I’ll never forget the concerned soul who stared at me with care as I hurled politely into my barf bag and asked me timidly if I needed a hair tie. Thank you, kind commuter.
Those who deal with the daily reality of this exhausting and invisible illness often have a variety of symptom management techniques. Some popular forms include but aren’t limited to: birth control pills, hormonal IUDs, GnRH therapy, heating pads, hot baths, anti-inflammatory diets, prescription pain killers, laparoscopic excision surgery, physical therapy, aromatherapy, acupuncture and my two personal favorites: indica cannabis and, of course, the internet.
So there I was, in my expensive but cozy studio apartment, newly single and probably nauseated. I’m an avocado-toast-eating millennial who’s youth was shaped by the release of the original iMac 20 years ago in 1998, who used Myspace in its heyday and joined Twitter in 2009 so a stranger to social media? Not I. Yet I had never fully realized until that time, 6 months in a row of self-prescribed Extreme Hermit Life, that social media could be all of these wonderful things — entertaining, informative, an outlet for creativity — and it could also be life affirming, it could be life changing and maybe most importantly of all, it could be life sustaining.
Many of my most beloved friendships have originated online by way of a social networking site. Physical proximity has never been a reliable indicator for a healthy or fulfilling relationship, so why do people stigmatize having friends “from online”? What is it about “internet friends” that makes people delegitimize in their minds the second half of that idea — an internet friend?
Presumably one reason is the prejudice that “meeting” someone behind a screen isn’t as “real” as meeting a person’s live-in-the-flesh being. But if meeting someone in this context is akin to getting to know them, then why can’t you get to know someone online? Before Gchat and Slack there was AIM and before that there were a bunch of other ways people stayed in touch, sustained long-distance friendships and cultivated remote relationships. Remember handwritten letters and snail mail?
Sure, bots and trolls exist on the internet, but for better or worse so do real humans and real words and real sentiments. I am here to affirm that not only is it totally possible to have, find and cherish internet friends, it is a total bonus for some and a game changer for many to have and participate in a digital community just as committed (if not more!) to your well-being as your IRL community is.
More than once my internet friends have sent sweet, hilarious direct messages after reading a slew of tweets in which I had aired my grievances. They have responded to sad posts with silly gifs and words of encouragement. These micro-interactions, remote and relatively non-demanding, have been huge and healing. My social media communities have, time and again, validated my pain, bore witness to my frustrations and listened to my Sag-rising rants. They have, in other words, rallied for me in those moments when I couldn’t rally for myself. I don’t think I need to explain the extraordinary kindness and significance of this.
There’s also this false narrative that “online life” isn’t “real life” and that these two worlds exist apart from each other, separately and independently. This is where I must disagree and daresay these worlds — the digital and the analog — are far more aligned and impacted by each other than some folks allow themselves to believe.
Sitting in my bed watching Netflix whilst nauseated, mending a shattered heart and wrestling with a fresh diagnosis of PTSD, depression and anxiety on top of my disease, I turned to social media for human connection and comfort. I’d lost friends during the course of my previous long-term relationship, due partly to being in a brand new city and partly to good old-fashioned misogyny. It was a triumph of unknown strength to surface from under my sheets let alone leave my apartment in those days (sometimes still today) and the ability and luxury of logging online to socialize was an incredible privilege. It still is.
Twitter introduced me to a roaring sea of tender and relentless women and non-binary creatives. Instagram reminded me that there was a colorful life beyond my bed that I could get back to someday, maybe, and that art can help heal a broken heart.
To be able to connect with others at one’s own convenience, in a location and at a time of one’s own self selection, is nothing short of a gift — especially for folks living with physical and/or mental illnesses. Some say logging offline or taking breaks from social media can help during periods when depression, anxiety or other factors related to mental health and well-being are causing a particularly high level of difficulty. While this advice can absolutely be beneficial for some, it can also be unhelpful or detrimental to others who turn to their online communities for companionship or support out of necessity due to illness, short-term and/or continuing.
Social media landscapes afford an accessible outlet for someone who’s emotionally, physically, or mentally hurting to reach out and say, “hi friends I’m not okay today, please send pics of your pets” and furthermore it allows their online community to be there for them during those times of hardship. For someone who’s homebound or otherwise confined by internal or external elements beyond their control, this avenue to communication & camaraderie is pretty darn cool.
A community on the internet can also serve as a safe space for someone to speak openly and honestly about the things they may not be ready to disclose to their IRL community. A review by the NCBI investigating how individuals with chronic illness experience online peer-to-peer support and how those experiences influence daily life with illness found, “online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness.” Moreover, “individuals used online communities to exchange experiential knowledge about everyday life with illness [and] this type of knowledge was perceived as extending far beyond medical care.”
I know from my own experience during physical flare-ups especially, when I can’t ignore my endometriosis or be separated from my fortress of pillows and electric heating pads, social media is a welcome godsend. In addition to serving as a place where I can find reprieve from my symptoms through pop culture content and viral memes, Twitter has granted me another neat and unique opportunity: to connect with other individuals living with chronic illness, to commiserate in real-time, to amplify endo-related info and voices and to learn directly from experts and organizations committed to this disease like @Endometriosis, @EndoWhat, @Endofound and even Senator Warren:
In tandem with online communities being supportive in times of adversity, perhaps just as imperative is their capacity to be supportive in times of victory. My social media peers have celebrated and reveled with me just as frequently as they’ve empathized and grieved with me. Additionally, it’s an ableist view to argue meaningful connection can’t occur online and only happens in real life, whatever that even means. For some living with chronic illness, online connections and digital professional work can be one of the few ways to make a living due to illness-related limitations that prevent them from pursuing work in traditional office environments. Besides, it’s 2018. Sincere connections and lasting, valuable relationships don’t need an IRL prerequisite — or even an IRL ending.
The friends I’ve made online are my friends. My online life is part of my life. Being a member of my online communities adds to my quality of life, not detracts from it. I didn’t ask for endometriosis, yet it is a detail of my story and it always will be. The best way I know how to move forward is with the knowledge that I am my own best advocate, that there will always be those who doubt the severity of my disease, and that at least for now I have strong weed and an even stronger online community.
meet some of my friends:
Abby Norman is a science writer and endo haver based in New England. Her book ASK ME ABOUT MY UTERUS is available now and a 100% must-read.
Amanda Rosenberg is a British werewolf writer and mental health advocate living in San Francisco. Her book THAT’S MENTAL releases November 2019.
Amber Discko is a loving cat & plant parent, queer femme and creator of the cutest ever, necessary and innovative self-care pocket companion Aloe Bud.
Brandy Burgess is a writer, editor, artist and religious educator. She is honest and generous in her tweets, a joy on instagram and prefers tequila, always.
Caroline Reilly is another fellow endo haver, advocate for reproductive justice and student at Boston College Law. Her tweets are a treasure and so is she.
Keah Brown is a reader, lover, writer and creator of #DisabledAndCute. She tweets at @Keah_Maria about cheesecake and how she should be writing.
Lane Moore is a comedian/writer/actor/musician and host of Tinder LIVE!. Her book How To Be Alone is available now for preorder and out November 2018.
Roslyn Talusan is a fierce AF freelance journalist, speaker and Taurus. They bless my twitter and instagram feeds with fire feminist thought and selfies.
SadeVEVO is a writer, content creator and fellow believer in Rih-ligion. Her book JUICE is more satisfying than a cold Gatorade, donation-based and out now.
Tracy Lytwyn is an endometriosis and women’s health advocate. Tracy lives in Chicago with her “dog-child” Juno, an adorable schnauzer-poodle.
continued reading:
Why Don’t We Believe Women When They Tell Us They’re Sick? | by Amy Carleton for WBUR, August 2018
The Doctor Doesn’t Listen to Her. But the Media Is Starting To. | by Ashley Fetters for The Atlantic, August 2018
100 Ways to Show Up for People with a Chronic Illness | by Maggie Levantovskaya for Broadly, August 2018
Rihanna Is The 21st Century’s Most Influential Musician | by Jenny Gathright for NPR, August 2018
Maya Dusenbery on How Sexism in Medicine Keeps Women Sick | by Michael Krasny for KQED, July 2018
Interview: Abby Norman On Endometriosis, Healthcare, And The Legacy Of Female “Hysteria” | by Evette Dionne for Bitch Media, June 2018
The Endo Look: Body Positivity Needs To Tackle Chronic Illness | by Caroline Reilly for Bitch Media, June 2018
The Nightmare of Being a Woman with a Chronic Illness | by Nicole Clark for VICE, June 2018
He Is 1 in 10: A Trans Man Shares What Life is Like With Endometriosis | by Alexandra Stovicek for The Endometriosis Foundation of America, June 2018
100 Ways to Make the World Better for Non-Binary People | by AC Dumlao for Broadly, June 2018
I have a mental illness and here are some real dangers I pose to you. | by Amanda Rosenberg, May 2018
Exhaustion, Heartbreak, Anger, Pain: Photographer Georgie Wileman documents her life with endometriosis | by Leah Fessler for Lenny, May 2018
The Histories of Cannabis and Race Are Intertwined | by Josh Jardine for The Stranger, April 2018
On Telling Ugly Stories: Writing with a Chronic Illness | by Nafissa Thompson-Spires for The Paris Review, April 2018
Managing Endometriosis When You’re Trans | by Jen Bell for Clue, April 2018
When Doctors Don’t Listen to Women | by Randi Epstein for the The New York Times, March 2018
What is Invisible Illness? (+ How to Explain it to Others) | by Renee Fabian for TalkSpace, March 2018
This Is What Living with Endometriosis Really Looks Like | by Brook Toreno for InStyle, March 2018
San Francisco To Dismiss Thousands Of Marijuana Convictions | by James Doubek and Richard Gonzales for NPR, February 2018
My Life With Endometriosis | by Anonymous as told to Katie Heaney for The Cut, February 2018
People Are Using Instagram To Show What It’s Like To Live With Chronic Illness, Trauma, & Disability | by Nicole Lane for Bustle, November 2017
My Failed Attempt at Illness-Chic | by Richa Kaul Padte for Racked, October 2017
The History of Hysteria: Sexism in Diagnosis | by Christina Vanvuren for Talkspace, May 2017
18 Things Medical Marijuana Does | by Erin Migdol for The Mighty, April 2017
Online Communities and Peer Support can Prevent Self-Harm and Promote Wellbeing | by Jennifer Russell for TalkLife, March 2017
Your Invisible Illness Is Valid | by Sam Escobar for Femsplain, January 2017
Keeping Myself And My Friends Through Chronic Illness | by Allison Rosecast for Endotwins, January 2017
Resilience, Endometriosis and Me | by Tracy Lytwyn for Femsplain, October 2016
The Path Of Living With Chronic Illness | by Lauren Jonik for The Establishment, July 2016
Pumpkin Spice Lattes, Endometriosis, and Gender Nonconformity | by Ashley Yergens for HuffPost, June 2016
I’m Chronically Ill and Afraid of Being Lazy | by Esmé Weijun Wang for ELLE, April 2016
4 Things Everyone Needs to Know About Endometriosis | by Michon Neal for Everyday Feminism, April 2016
The Social Media Cure | by Amanda Hess for Slate, March 2016
Endometriosis Is a Social Justice Issue | by Jhumka Gupta for HuffPost, December 2014
Social Networks a Lifeline for the Chronically Ill | by Claire Cain Miller for the New York Times, March 2010
browse more stories about chronic illness in Bitch Media, The Mighty, NPR, Longreads, The Atlantic & The NYT
additional resources:
Aloe Bud | an app for gentle self-care reminders, daily motivation & more
Clue | menstrual and symptom tracking app, encyclopedia & health resource
lutte | a space for disabled and chronically ill women and non-binary artists
The Mighty | a digital health community created to empower and connect people facing health challenges and disabilities
NIMH website | also Chronic Illness & Mental Health
The Trevor Project | 24/7 safe, judgment-free place to talk for LGBTQ young people: call 1–866–488–7386 or text TREVOR to 1–202–304–1200
The National Suicide Prevention Lifeline | 24/7 free and confidential support for anyone in distress: call 1–800–273–8255 or chat live
