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This Instagram Account Is Making Invisible Illness Visible, And It’s Changing Lives

Instagram account sicksadgirlz give invisible illness visibility

One afternoon, during a regular — admittedly mindless — scroll on Instagram I stumbled across a post from Lena Dunham. Pictured was a rope-patterned tattoo on the nape of her neck that said “sick”. The caption read:

“Sometimes the thing you’re most scared of being called is the best thing you can call yourself.” And for the first time, in a long time, I felt seen.

I too had been struggling to accept my auto-immune condition, Crohn’s disease. I felt a strange liberation in finally admitting that I was, in fact, sick.

Soon after, Dunham pointed her followers to an Instagram account titled @sicksadgirlz. A new presence on the e-scene, @sadsickgirlz highlights the stories of women who suffer from the often misunderstood lived-experience of mental and physical illness. Since activation, the simple and yet resonating tagline “tell us where it hurts” has fast become a safe place for thousands of women to tell their stories, their way.


Founder, Rosa Mercuriadis, knows the unique pangs that come with chronic illness having lived with lupus, fibromyalgia and chronic fatigue for most of her life. “I spend a lot of my personal time in cosy spaces with cosy people, particularly women. At some point,  I realised this was a real luxury I had cultivated. So one night with a few other girls, I wondered if we could create this digitally.”

Social media is often critiqued (guilty) for being a vapid vortex of filtered images and highlight reels — and rightly so. It originally catapulted into the lives of millennials as a podium for self-expression. But for a while now, there has been a seismic shift in the dialogue surrounding social media. And in particular, Instagram.

What was once a hub for friends to share their memories has become an all-encompassing marketing giant. One with the potential to threaten the psychological safety of many, and blur the lines between fiction and reality inconspicuously.

However, less spoken about is the online communities that emerge from these popular platforms and bring awareness and support to underrepresented and vulnerable groups of people. Evident in movements like #metoo, there is no longer a gatekeeper to the stories of women — often seen in traditional media coverage — but instead, an open door.

According to psychologist Samantha Spafford, founder and psychologist at Positive Mind Works, women who are dealing with chronic illness are often some of the most vulnerable. “Unfortunately, people with chronic illness face many mental health issues which can stem from things like isolation and lack of empathy.”

For me, Spafford’s observations could not be more real. I expected the physical and mental challenges that would take place after my diagnosis. But I didn’t anticipate the social isolation that can come from living with an invisible disease.

Soon after my first stay in the hospital, it became devastatingly clear that some of those close to me weren’t prepared — or willing — to take on the unpredictable journey of an auto-immune disease. My story did not make sense (“young people aren’t meant to get sick, what do you eat?”) and instead, I felt judged and scrutinised. After almost three years of surgeries, countless tests, missed social events, and unanswered texts, I saw my support network drastically shrink. Unfortunately, this is not a unique story.

And then — akin to the magical wave of a wand — after simply pressing a “follow” button, there were instantly thousands of women who deeply understood.

 

View this post on Instagram

 

Hi, my name is Nicole and I have Crohn’s disease and a myriad of other autoimmune conditions. It all came like a flood when I turned 25. It took 2 years, 4 procedures and countless doctors visits to find answers. I have a galaxy of scars to remind me. I could talk about the friends I’ve lost from being “sad” and not adopting a vegetarian diet like they suggested, or the medical bills, the isolation, resigning from my job as a journalist, and the emotional turmoil that comes with feeling like your body failed… My resolve? Kindness. The kindness people often forgot to have with me. Getting on a train, ordering a coffee, going to work are all places I try to watch out for opportunities. People’s pain often lives in silence – something I only fully understood in my own pain. I hope that I have made someone’s life just slightly easier by offering them a seat or buying them a cookie. Love, @nicole.d.singh

A post shared by Sick Sad Girlz Club (@sicksadgirlz) on

After sharing my own story on @sadsickgirlz, my heart dropped with the amount of empathy and support that followed. Women from all over the world who had also suffered from Crohn’s and other auto-immune conditions shared their own stories and well wishes.

They weren’t veiled with advice on how to get better, they simply empathised.

It’s an experience shared by the entire community every day. “I get messages from girls who have no one in their life they relate to and all of a sudden you’ve got thousands of them!” says Mercuriadis.

While finding online friends seems like a relatively small part of the healing journey, research shows that it’s critical. A study published by the Journal of Behavioral Medicine found that not only is poorer emotional well-being correlated with poorer physical health, but it can also be a strong predictor in the prognosis of one’s physical illness.

“The narrative of the role of women has always been subservient, so we want a place to share our stories and feel believed and seen by other women who understand how hard it is to live in the shadows.”

“The understanding that our mental and emotional wellbeing is closely linked is widely accepted in many circles, even amongst medical professionals. Studies indicate this is not a causative relationship but a correlation.” Says Spafford.

While Spafford believes that a physically-present community is important, she also has confidence in the support that these social media communities provide.

“The first [positive impact] is simply by creating awareness around these conditions and also providing a support network that people can turn to when they are feeling isolated or lonely. The nature of chronic illness and that dealing with this often means physically not being able to get out and about or attend community things consistently. So being able to reach out to an online platform makes perfect sense and ameliorates for the isolation otherwise experienced.”

When asked about the @sicksadgirlz journey so far, Mercuriadis reflects on the importance of sharing the female experience in its many forms. “The narrative of the role of women has always been subservient, so we want a place to share our stories and feel believed and seen by other women who understand how hard it is to live in the shadows.”

Instagram is unquestionably saturated with often unrealistic and superficial portrayals of health. What’s so special about Rosa Mercuriadis’ endeavour is that she’s carved out an authentic — and refreshingly unglamorous — space for women to talk openly about their lived experience. The stories are not easy to read, and they often don’t have happy endings. They do, however, empower women to seek answers and break their own glass ceilings in doctor’s offices, hospital beds, and beyond.

There is a strange peace of mind that comes with knowing that every morning when I wake up — tired of course — and guzzle a plethora of pills, there are thousands of others e-friends who relate. “I think @sicksadgirlz has been unique from the point of view of we don’t align with any singular issue, we don’t care if you are always sick or always sad or you have this or that, our girls all relate to each other because the feelings that surround the diagnosis or trauma in our lives bonds us.” Mercuriadis reflects.

Who is this Nicole Singh? Well, in true millennial fashion, she’s many a thing (depending on the day). But, for efficiency’s sake, she’s a Sydney-based writer, bibliophile, and hot-chocolate connoisseur.