Find Solace In The Instagram Communities For Women With Chronic Illnesses

"I was suffering so much, and I just remember thinking, Oh my god, this is it now. This is my life." In 2013, when Mimi Butlin was at university, she got viral meningitis. "That was the trigger," she says, "and I just didn’t get better."

Eventually, Mimi was diagnosed with ME, a chronic condition which causes extreme tiredness and difficulty carrying out everyday activities. We all understand how debilitating pain can be, but it is difficult to comprehend it as a permanent state of being. Yet for some, this is a reality.

In the years since her initial diagnosis, 26-year-old Mimi has continually struggled with her health and has also been diagnosed with three other illnesses: fibromyalgia, connective tissue disorder Ehlers-Danlos syndrome and PoTS syndrome, a nervous system disorder which causes fainting.

In early 2019, as a way to deal with constant cycles of pain and discomfort which can leave her unable to get out of bed for days, Mimi started drawing portraits of celebrities who had spoken openly about living with a chronic condition and posting them on her Instagram account – @cantgooutimsick – alongside captions detailing their experiences.

One of these celebrities was writer and actor Lena Dunham, who has Ehlers-Danlos syndrome and had a hysterectomy in 2017 after a long battle with endometriosis. When Dunham replied and shared her illustration on Instagram, Mimi knew she was on to something. "That gave me a massive incentive to keep doing it," says Mimi, "and lots of people started to send me their experiences and their stories."

As the stories began pouring in, a common thread emerged: women and girls who found that the symptoms they were experiencing were not being taken seriously by medical professionals, or that their friends and family didn’t really believe them when they said they were in pain.

While one in three people in the UK live with some sort of chronic pain, many conditions disproportionately affect people who were assigned female at birth. Fibromyalgia, for example, which causes pain all over the body and memory and concentration issues (known as 'fibro-fog'), affects nearly one in 20 people but seven times more women than men.

As many of these conditions are invisible and difficult to detect in scans or blood tests, Mimi explains that "one of the hardest parts is trying to convince people of the pain you’re in or that things aren’t right."

It was this common experience which prompted Mimi to start posting a series of portraits on her Instagram, which she calls #BelieveUs, drawing attention to the women who have been disbelieved or written off as hysterical.

Krithika is one of these women. Her story, which Mimi shared in a caption, begins: "I had 10 false diagnoses, over 14 failed treatments, and it took me 12 years to be diagnosed with endometriosis."

Although one in 10 people with a uterus have endometriosis – when bits of the tissue that lines the uterus grow on other pelvic organs – many suffer for years without a diagnosis. At times, Krithika was in such severe pain that she wasn’t able to eat or laugh. The average diagnosis time for endometriosis is somewhere between seven and 12 years, and although it affects the same number of women as diabetes, research into the condition is funded at 5% of the rate.

Before Krithika finally had effective surgery in December 2018, she was "put through hell". "Some doctors insinuated that I had mental problems and that I was making up my symptoms. My years of suffering were so hard not just because of the pain, but because of the way medical professionals, family, and friends made me feel."

This is a feeling which Mimi knows well. "So often our illness is blamed on our mental state," she says. Mimi would visit doctors and wouldn’t tell them she was experiencing mental health problems. "I was so scared that they would cling to that as the reason that I wasn’t well and would stop searching for answers."

Mimi is keen to point out that she does not think doctors purposefully misdiagnose women but that so often if the cause of pain is unclear, women are accused of exaggerating or being too concerned with their health.

"Going to the doctor as a chronically ill person is such a tiring and traumatic thing. You’re at your most vulnerable and when a doctor doesn’t treat you in the right way or turns the blame onto you, it’s so damaging," she says. "I didn’t have any mental health issues before I was unwell. The trauma of the experience of not being well left me with anxiety and suffering with depression."

Twenty-eight-year-old Rosa Mercuriadis has been dealing with the connection between mental and physical health for years. "I’ve been sick essentially my whole life," she says. Rosa was diagnosed with anxiety when she was 9 years old, and has lupus, fibromyalgia and chronic Epstein-Barr (a viral infection which can cause issues such as anaemia and nerve damage).

Rosa is a firm believer that mental illness can affect physical illness and vice versa. "If you’re physically ill and so can’t do things in a normal way – I couldn’t go to school for a long time – of course you’re going to be sad. It’s a vicious cycle."

Last year, Rosa set up @sicksadgirlz, dedicated to girls living with physical and mental illness, as a place to share experiences and coping tips. She shared her own story and encouraged others to come forward, with the aim of creating a supportive online community that didn’t exist before.

"The internet is a scary and weird place that could be used for really amazing things," she says, and Instagram seems to be the most effective way of reaching out to girls in pain. Since launching in April, Rosa has received and shared hundreds of stories from girls all over the world, including the UK, the US, Mexico and Sweden. The impact of this international platform is clear: "We get messages from girls who say they didn’t kill themselves because they read a girl’s story and it felt like home."

Setting up Sick Sad Girlz has also helped Rosa manage her own experiences. "There’s a lot of powerlessness around chronic illness – both physical and mental. How do I use my lifetime of trauma in a way that feels useful? I needed to find a way that I could be of service through my own story and so, from that point of view, it’s amazing," she says.

When Mimi was first diagnosed in 2013, she searched on Instagram for anyone posting about the unfamiliar conditions she had been diagnosed with. Now, with pages like hers and Rosa’s, she hopes that anyone facing a similar situation can find solidarity online. "I wanted to show anyone who was feeling these things that they weren’t the only one. It’s hard to share your story if no one is coming to you and saying this deserves to be seen, so I wanted to give it a platform. I wanted to show that I cared and that I believed them."