When Lucy Henry* returned to work at her supermarket job after trying to take her own life, she didn’t expect to be punished by her boss.
"I was called in for a disciplinary for my absence, and in that disciplinary I said I’d attempted suicide," says Lucy, who was having a "rough patch" at the time, in 2014. "[My employers] adjourned it halfway through to discuss, and when I returned they continued to give me a written warning about the absence."
Lucy, now 29, was suffering from premenstrual dysphoric disorder (PMDD), a hormone sensitivity disorder that affects 5-10% of people who menstruate. Though it’s known colloquially as "severe PMS", PMDD is much more severe, with intense symptoms. These range from the physical – fatigue, blurred vision and loss of appetite – to the psychological, like rage, paranoia and depression. Like Lucy, an estimated 15% of women with PMDD will attempt an act of suicide, while even more experience suicidal thoughts.
Symptoms occur about one week before a period, during the late luteal phase of the menstrual cycle. It is thought that PMDD occurs in women who are sensitive to the natural fluctuations of female sex hormones oestrogen and progesterone. While research is sparse, it has been linked to a hormone-sensitive gene complex.
While many women dread the bleeding phase of the menstrual cycle, for women with PMDD, the sign of blood is a blessing. Their symptoms fade and life returns to "normal". Until next month, when it all begins again.
"Some women will say PMDD feels like a half life," says Dr Tory Eisenlohr-Moul, a clinical psychologist specialising in the menstrual cycle and director of the Cyclical Mood Disorders Clinic in Chicago. Because PMDD is tied to hormonal changes triggered by ovulation, symptoms are cyclical. "It’s a continuum."
Unlike PMS, which most women of reproductive age will experience to a greater or lesser degree, the symptoms of PMDD are so intense they disrupt everything in the sufferer's life, from relationships to work.
Many women suffering PMDD find it gruelling to hold down jobs, let alone pursue a career. Of the 12 women with PMDD I spoke to, all had at some point adjusted their work life and dreams to suit the disorder.
"I lasted less than a day at my dream job," says Laura Murphy, a PMDD sufferer who runs Vicious Cycle, a project raising awareness of the condition. "I was having panic attacks at lunch and in the toilet. My boyfriend had to come and get me."
Of the 12 women with PMDD I spoke to, all had at some point adjusted their work life and dreams to suit the disorder.
Murphy ended up working temporary jobs that afforded her a level of flexibility to work around her PMDD weeks. "I didn’t want to be trapped, owned and constantly in disciplinaries," she says. "You do the job and you go, which was perfect for me."
Lucy’s dream is to work in art. "I’m creative," she says, "but when I’ve got my PMDD, picking up a paintbrush is the last thing I want to do. Your motor skills [reduce], and I find less patience and less ability."
"Women with PMDD find it particularly hard to be around people when they’re at work," says Clare Knox, a PMDD researcher and educator, who is conducting a study into PMDD in the workplace. "Normal workplace practices that we all take for granted can be difficult."
To cope, many women "mask" their symptoms at work, says Knox. "One woman said it’s like Mary Poppins on crack. You go to work and put on a mask, but inside are crippled with depression, anxiety, maybe thoughts of suicide, but you can’t release that in the workplace."
However, suppressing symptoms can have long-term effects on health and wellbeing, says Knox. "It’s a negative coping mechanism. Suppression is dangerous."
Most of the women I spoke to had also experienced discrimination throughout their working life.
Lucy’s employers continued to show a lack of compassion and support after her suicide attempt, she says. "I was trying to manage my absence as much as I was going to work, rationing my days off so I wasn’t getting disciplinaries." She eventually left the job due to stress.
"I was put on the self-service checkout during my PMDD week and it was too much. I ended up walking out. I couldn’t cope."
While quitting offers an escape, looking for new work can be even more difficult.
"When I was applying for jobs, if I mentioned [PMDD] in an interview, the interview ended abruptly afterwards," says Lucy. "I’ve never got a job where I mentioned it in the interview [so] I’ll never mention it in an interview again."
Knox says a stigma surrounding female reproductive issues leads to unfair treatment and misunderstandings. "We don’t feel the workplace is open to discussing reproductive health," she says.
It’s like Mary Poppins on crack. You go to work and put on a mask, but inside are crippled with depression, anxiety, maybe thoughts of suicide.
"PMDD is a complex condition which can face both menstrual and mental health stigma," she says. "It is also an invisible disorder, which means that it can be overlooked or easily dismissed."
"Some women report negativity from female colleagues, who trivialise PMDD as 'just period pain'. This stems from a lack of awareness or lived experience of menstrual problems and can cause a lot of additional anxiety for sufferers in the workplace."
Through her organisation See Her Thrive, Knox runs workshops for employers on how to support female staff with reproductive health disorders like PMDD. "The workplace has the potential for being a really important support network for women with PMDD if they have the people to talk to, resources to share and seek help."
"I want this to be a wake-up call for companies to put reproductive health on their agenda."
Despite PMDD being listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition as a "depressive disorder not otherwise specified", some health professionals are known to deny its existence. Some haven’t even heard of it. While it can occur alongside other mental health problems, PMDD is often falsely diagnosed as bipolar disorder or major depressive disorder. Some are told it is simply PMS.
Lucy, who has endured severe depressive episodes since she was 13, had seen "30 to 40" doctors over 15 years before she was diagnosed in 2016, aged 27. "You have to really fight that it’s not PMS," says Lucy. Doctors "played down" her experience, she says, with one doctor telling her that "this is just the way it is".
PMDD sufferers' experiences were affirmed in 2016 when the condition was officially classified by the World Health Organization. There is now a growing body of evidence and understanding of PMDD, and it’s an active research subject.
Things improved for Lucy. She was referred to a mental health team and prescribed antidepressants, a common form of PMDD treatment. Others have hormonal therapy like birth control pills or hormonal injections that bring on a "chemical menopause", or a total hysterectomy, the surgical removal of the uterus.
Lucy now has a part-time job in a local garden centre, which is more understanding of her condition. Her boss is letting her avoid customer areas during the Christmas shopping period so she doesn’t get overwhelmed. "They don’t know much about PMDD, but they’re willing to make allowances for it."
While exercise helps, Lucy says no treatment has totally "cured" her yet, leading her to consider more permanent treatments. She’s thinking about having a child soon, so she can have her uterus removed.
"It deducts so much from my life that I would like to have some of my younger years with the freedom from PMDD," she says, "to start improving career paths and becoming a bit more successful."
For more information and support on PMDD, visit the International Association For Premenstrual Disorders or Mind. To contact Samaritans, call 116 123 or visit their website.
*Name has been changed