Illness narratives are broken and they're failing women like me | Emma Hardy

"There was a moment, deep in the throes of my illness, when I realised I was never getting better. There was no cure for me: only ways to manage. At that time I was not managing very well. Of course, writing about my past self in this way gives the illusion that I was once in the throes of my illness and that it did get better. This is deceptive. I live with a chronic illness called premenstrual dysphoric disorder, or PMDD."

"It rears its head in the week or two before menstruation then goes away. One week I'd be lying on my bedroom floor, unable to move, starting fights with my partner. Then my period would come and I'd be back at work, seemingly fine, and completely oblivious to the person I'd been mere days before. Notably, this illness is chronic and recurring. I am always in, or just out of, or about to enter the throes of my illness."

"For three months, I removed my birth control and kept a daily log of my moods and symptoms. I saw GPs, gynaecologists, endocrinologists, psychologists, psychiatrists. I was lucky: my diagnosis only took months. For those suffering from the chronic pain of endometriosis, a diagnosis takes an average of six and a half years. I continued to track my symptoms long after I needed to. I wanted to know more."

"I still hoped that if I properly understood my illness then, with enough self-awareness and willingness to fight, I could get through it and come out well. In western culture, the dominant narrative structure is that of the hero's journey. A singular character is calle"

PMDD is a severe premenstrual disorder that causes depression, anger, and suicidal ideation. Symptoms appear in the week or two before menstruation and then subside when the period begins. The condition is chronic and recurring, with the person often seeming fine at work shortly after being unable to move or starting fights days earlier. A realization in mid-2020 came after an exhaustive diagnostic process at age 27, including removing birth control for three months and tracking daily moods and symptoms. Multiple specialists were involved, and diagnosis took months. The experience also contrasts with endometriosis, where diagnosis can take years, and continued tracking reflects a desire to understand the illness and manage it.

Read at www.theguardian.com