When you look at the statistics around women who deal with chronic pain conditions ranging from fibromyalgia to interstitial cystitis, the numbers are truly staggering. In fact, I myself am a woman living in chronic pain. According to one study, women are up to seven times more likely to live with a chronic pain condition like fibromyalgia than men.
Why? Well, the answer is complex and can’t be boiled down to just one thing. One key element is hormones. Sometimes the interplay of hormones produced by the thyroid in women can actually send the body into an auto-immune response, creating chronic inflammation. Essentially, as is the case for me, the body is perpetually attacking itself, creating a cycle of debilitating pain that makes everything from choosing the food you eat to what kind of jeans you wear an excruciating process.
Research has also found that women’s pain centers in the brain are much more active than men’s. While doctors have slapped a multitude of different names to these chronic pain symptoms, there is likely something more systemic at play. This makes getting diagnosed feel nearly impossible. It took me two years to get a final diagnosis and, in turn, to create a pain-management system. One woman who understands that plight completely is Sinead Smythe, who had to take 200 trips to the ER before finally receiving an endometriosis diagnosis.
Heartbreakingly, Smythe was just 11 years old when she first started feeling the symptoms of her chronic pain. Time and time again, as is the case with most women in these situations, she was told by doctors that she was just making things up or having “bad periods.”
But in 2016, she was finally diagnosed with endometriosis after dealing with a previous misdiagnosis of Pelvic Inflammatory Disease. Endometriosis is the appearance of endometrial tissue in the body outside of the uterus that leads to inflammation and chronic pelvic pain.
“The pain can be so crippling that I cannot move from the same position, I can be rolled up in a ball for hours on end,” Sinead said. “I lost two jobs in 2015 and 2016 as a receptionist due to endometriosis, as I became unreliable due to the daily pain. My employers didn’t understand, they looked at me as if I was lying because I didn’t physically look unwell.”
It’s a common story among chronic pain sufferers. It is an invisible illness. Thankfully, though, this tough woman is on the path toward managing her pain and helping others feel strong as they fight for their diagnoses and care. Here’s what she had to say to Bustle:
I would love if people who don’t suffer [with endometriosis] understood those of us who do aren’t being dramatic — we aren’t having a ‘bad period.’ We are living with an incurable, invisible chronic illness which affects almost every single aspect of our lives. […] It takes the average woman over 7 years to be diagnosed [with endometriosis], which is unbelievable. I really hope and pray this illness becomes more noticed. If endometriosis was labeled as a disability, it may help us educate the world, and also may help those suffering from the unknown.
She’s even created a Facebook page called Nay – Endosister to create a community of solidarity for women suffering from endometriosis. As a fellow chronic pain sister, I am proud of Smythe for persisting and helping other women cope along the way!