'Invisible disease cost me $100K and my career'
"You know, if men were taking that much time off because their balls hurt, there would be an outcry," Jane* tells me, emphatically. She has a point.
In the last year, she has taken four months off work after being diagnosed with endometriosis.
She is one of about 700,000 Australian women paying for the debilitating disease - quite literally - racking up a collective national bill of about $7.7 billion annually, two-thirds of which can be attributed to lost productivity and the rest in direct healthcare costs.
"It's sort of swept a little bit under the carpet," she continues.
"You take your anti-inflammatories and you have your heat pack and you hope to God you don't bleed through everything."
Despite being diagnosed later in life, the 39-year-old sits at the more devastating end of the cost spectrum: now only able to work part-time and being told it's unlikely she will ever work at the "same full capacity" again.
So I find her calm composure nothing short of admirable as she roughly calculates the disease has cost her close to $100,000 already, tallying lost income and medical bills.
"I've just had to let that go and say, 'that's the way it is," she says, conceding, "otherwise, you would drive yourself crazy."
She further justifies, "There are definitely women soldiering on in worse positions than me. Maybe they're the sole provider for their family who don't have the choice to take time off or run out of sick leave."
'I'm living 3 out of 10'
Money aside, Jane says she can live with the pain: "I'm living a 3 out of 10 but I'm doing everything I need to do so it's not bothering me," she reasons.
But it's the heavy periods, some days leaving her literally housebound, which get to her, she says. "I would just get annoyed if I put a tampon in and, about five minutes later, I was flooding through it. It was almost instant. So then I'd need to have back up. To put it frankly, you can't even shower, you're chucking your towels every time."
Heavy periods and chronic pain are a daily reality for one in 10 Australian women living with endometriosis.
Yet the average diagnosis is taking between seven and 10 years, largely due to women 'normalising' these debilitating symptoms, which are not only wreaking havoc on their mental and physical health, but in turn, their finances and even their careers.
Each woman is estimated to spend about $12,000 per year on the disease, mostly coming from their own pockets.
In addition to medical expenses, many are running out of sick leave, working part-time and passing up promotions. And for some women, like Jane, it's a lot more.
Turning down promotions
Aisha Cumming has been getting such severely painful periods since she was 14 that she would often be left "writhing on the floor in pain".
These days, the 23-year-old is working in the film industry and needs to take sick days most months, which she now does without pay.
"At the moment it's pretty tough," she admits. "I work contract work so you don't get any sick days. It's really hard because I'm always taking time off or I might take the one day but otherwise push myself which isn't good because it puts stress on the rest of your health," she says, adding she has already spent "thousands" on medical treatments this year alone, in addition to lost income. No small plight for a woman of her age.
"I have about one week a month where I feel like a normal person," she adds, citing "varying degrees" of aching, discomfort and fatigue the remainder of the month. This also includes getting easily overwhelmed. "I stress very easily," she says. "I think I often come across as quite an angry person, which I'm not, it's just I'm trying not to scream."
Sadly, it's this inability to cope she foresees hindering her career going forward: "I already don't do some things I would like to do or probably should be able to do because it's just too much stress on top of doing work and doing life so I just have to minimise things or I can get very overwhelmed."
"I've only just started my career but I can see in the future I'm probably going to turn down things like promotions or you know higher positions where you've got more responsibility or people to look after, because that's too much."
Running out of leave
For Jess, being diagnosed with endometriosis last year was somewhat of a relief, after experiencing severe symptoms since early high school, something she describes as "like someone is squeezing your insides with something really sharp".
"It would make me vomit sometimes it was that bad," the 28-year-old, who works in recruitment, tells me.
"I've had a lot of sick days," she admits.
"I reckon averaging a couple of days off sick every month - which obviously chips into your annual leave after you've used all your sick leave. I wouldn't be in bed all day but I would need to be at home because I would be worried about the mess I was going to make or just feeling generally shit and tired and like I just needed to be at home."
"I pretty much experienced having the symptoms of getting my period for like three weeks of every month from incredible pain from my belly button to my knees, and God, terrible breast pain and really, really up and down, sometimes I would think I was going absolutely mad."
'Often these women are seen as unreliable'
Donna Ciccia, director of Endometriosis Australia, tells our sister paper whimn.com.au these sorts of situations are common: "We have heard of many women losing their jobs or not being able to progress in their career. Often they are seen as unreliable or needing too much time off work."
She adds, the economic burden for these women and their families is "significant".
"This burden comes from many angles but the most common is loss of income and career earning potential. other economic birders often include ongoing health professional, consultations and treatments, medications, surgeries, to name a few."
While there is "no easy answer", Ms Ciccia says creating greater awareness and understanding among the wider community is crucial, in order to help employers grasp a better understanding of how to manage employees with endometriosis and help them reach their full potential.
"We have to talk about it and have that conversation, it is truly a quality of life disease. We have many families in touch with us including fathers wanting to fix their daughters especially the pain and isolation they are feeling. By having that conversation we empower girls and women that that are not alone their disease and suffering is real it not all in their heads."
"There are quite a few different options that may make it easier for businesses and staff," she adds, adding the organisation is currently consulting with experts to see how they can add value to small and large businesses.
Citing some possible suggestions, she says employers can focus on "time management and scheduling around their cycles if this is possible".
"We have also heard of some businesses including a Leave Bank so that extra sick days can be taken by anyone in the business needing extra time off work. Being creative and coming up with a solution to suit your individual business."
Head to whimn.com.au for more stories like this one.