For most people, pain comes and goes. It can be agonizing and immobilising, lasting for days, weeks, months, or even years. Yet we can feel safe in the knowledge that the pain we’re experiencing isn’t our permanent state of being. But this isn’t the case for everyone.
“You never imagine yourself waking up one day and just being in pain that will never go,” says Amelia Butlin, the 26-year-old illustrator behind an Instagram account documenting the experiences of those living with chronic pain and illness: @cantgoout_imsick.
With few advocates or resources online, Butlin has decided to use her love of art to create a community for women who want to share their experience with chronic conditions and the crippling, never-ending pain associated with them.
Earlier this year, Butlin began drawing portraits of celebrities like Selma Blair, Lena Dunham, and Sarah Hyland, who have spoken out about their experiences with multiple sclerosis (MS), endometriosis, and kidney dysplasia, respectively. Underneath her portrait, Dunham commented “Wow I just cried thank you.” Since then, the illustrator has been flooded with messages from people who want to share their own stories, encouraging her to start a series she calls #BelieveUs.
“[Living with chronic pain] is one of these things that is so isolating,” she explains over coffee at her local pub in Fulham, London. “Unless you have engaged with the online community of sufferers you would think it's just you, because you’re made to feel that way.”
Butlin was hospitalised with chronic meningitis in 2013 after her first year studying History of Art at the University of Leeds. But as she moaned into a hospital pillow to stop herself screaming from her migraines, she had no idea the pain would stay with her for this long. “You don’t imagine that could happen,” she says. Butlin has now been diagnosed with Postural tachycardia syndrome (PoTS), a nervous system disorder that causes lightheadedness and fainting, Ehlers-Danlos syndromes (EDS), a connective tissue disorder, and fibromyalgia, which causes all-over body pain, headaches, extreme fatigue, and problems with mental processes (also known as “fibro-fog,” according to the NHS). In her experience, Butlin has found that “if one thing isn't working in your body, then the rest of your body kind of falls apart.”
While one in three individuals in Britain suffer from some degree of chronic pain or discomfort, as the Ramsay Health Care hospital group reports, it remains an under-researched and dramatically underfunded area. And one that affects women badly. In fact, as NRS healthcare reports, fibromyalgia has nearly two million sufferers in the UK alone, and 80-90 percent of those people are women.
Lady Gaga spoke about her battle with fibromyalgia as she prepared for the Super Bowl halftime show in her 2017 Netflix documentary Gaga: Five Foot Two. It became an important moment for discussions around the illness, as the singer showed the psychological and physical suffering on camera for all to see.
Butlin explains how she had to go through “a grieving process” for the person she was before the pain began. “Because you're never going to be that person again,” she says, “so you have to grieve yourself and make the most of this new life that you have now because it's just not the same. It's hard. It's almost like the death of yourself.”
Because fibromyalgia cannot be detected in blood tests or scans, and patients look “normal” and healthy, getting the correct diagnosis poses a huge problem. Butlin explains that people are often disbelieved by both doctors and loved ones, which can come with serious psychological consequences for the sufferer.
“We all grow up going to the doctor, they give you antibiotics and then you're fine,” Butlin says. “But that’s not been the case at all. I've been diagnosed with PTSD from all of the trauma I've had going to the doctors and people not believing you and saying it's in your head.”
By starting her illustration project, Butlin has realised she is not alone in feeling this way. One woman, whose story is shared in a caption under the title ‘Believe Rose,’ said: “I have been misdiagnosed and written off as crazy too many times to count. I was sent to a locked eating disorder unit when I was 17 because my doctors assumed I just didn’t want to eat. In reality I was in excruciating pain and vomiting every time I ate. I was told it was bulimia, anorexia, anxiety, depression, psychosomatic pain, all before they would admit they couldn’t figure out what was wrong. I have Ehlers Danlos Syndrome and it’s not in my head. My pain is real. My dislocations are real. My vomiting and nausea are real. It is all real.”
Reading these stories about various chronic illnesses, it becomes clear just how much some people have had to fight to be believed. Jameisha, who has been diagnosed with the inflammatory autoimmune disease Lupus, thinks “it’s a combination of a lack of knowledge on their part, as well as my age and gender. There’s often a patronising tone, as if I don't know much about my own body.” She continues in her caption: “But it’s not just doctors. It’s also the stranger that assumes I’m young and healthy enough to take the stairs, or the family member that just doesn’t think I’m trying hard enough.”
Claudia, who has been diagnosed with myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS), as well as fibromyalgia and hyper-mobility joint syndrome, is also quoted saying: “I would report constant muscle stiffness, hip pain, back pain since I was a teen and be met with silence. I have self-diagnosed my entire life and been my own doctor because no one heard me.”
Even Selma Blair, who Butlin has illustrated, was told the reason she was feeling exhausted all the time was because she was a “single mother.” It took her collapsing at the doctors for them to give her the tests they needed to be diagnosed with MS.
Sufferers of endometriosis (a condition where tissue that normally lines the inside of your uterus grows outside your uterus, often affecting your ovaries, fallopian tubes, and the tissue lining your pelvis) are some of the worst hit, with an average diagnosis time of 7.5 years in the UK. Yet figures shows that one in 10 people with a uterus suffer from the endometriosis.
For those illustrated on Butlin’s account, chronic illness has presented two debilitating problems: the physical pain of their condition and the emotional burden of trying to convince others it exists. In a similar way to the #MeToo movement, Butlin hopes #BelieveUs will encourage those living with chronic conditions to find strength in numbers and speak out about the mistreatment they have faced, with women “finally saying ‘I’m not going to live in pain in silence.’”