Endometriosis New Zealand recently met Lucienne to discuss her experience managing endometriosis in the workplace, including how endometriosis has impacted her career, and what are the difficult things to manage in the workplace.
Are you currently employed?
Yes
What type of role do you do?
I am a project manager in the technology industry
Can you briefly talk about your career, your role and the point at which endometriosis became a factor you needed to manage in that environment
I have always been academically and career-focused, I attended King’s College London and have a BA in History. I started working in the financial services industry after finishing my studies, focussing on using technology to automate business processes and moved into a demanding role as a business analyst for a large fund manager. For the majority of this time as I was climbing the career ladder and trying to impress my superiors, I was undiagnosed with endometriosis. As I entered my late twenties my symptoms began to heavily impact my ability to divert the energy and attention I wanted to, into my career. I was plagued by fatigue, pain and frequent forced absences from work. The brain fog was the main obstacle I personally battled with. A fog that was both caused by my pain, but also caused by pain killers – leaving me in a cycle of constant conflict between choosing to be in pain and try to focus, or take painkillers and try to focus – neither option was conducive to excelling in my career. At this point I fought for my doctors to find an explanation to my symptoms so that I could perform at work. It wasn’t until I collapsed boarding a flight due to a burst ovarian cyst, that I was referred to a gynaecologist – about 10 years after I first experienced symptoms of endometriosis.
Has your endometriosis affected your employment, career, work life etc? If so, how?
Endometriosis massively affected my confidence in the workplace. Taking time off work made me feel that I was playing catch up to my peers. I would become anxious if I were given assignments, that I might not be able to finish them due to the unpredictability of endometriosis. Endometriosis also stopped me feeling comfortable moving jobs, the thought of having to go through the process of explaining my condition to a new employer, and wait 6 months for any sick leave entitlement made me feel that I wasn’t a valuable employee. Despite being incredibly talented in my role, I thought I would never succeed at any role, or be worth anything to an employer. I stopped considering myself an asset to my company, and instead felt that I was a burden. Even though, for the most part, I was exceeding the expectations of my boss and completing my work, there was an underlying feeling that I was not as good as the healthy alternative workers in the business.
What if anything has been the most difficult thing about managing your endometriosis in the workplace
The hardest thing about endometriosis in the workplace, is that it is considered by many to simply be bad periods. I have been accused of being sensitive, by comments such as “isn’t that just ordinary lady issues?” or “most women deal with this every month” from both female and male coworkers. Endometriosis is not sensitivity to pain, or bad cramps – it’s far more than that – it’s fertility issues, chronic pain, brain fog, financial pressure, hormonal imbalance and it’s unrelenting. Wanting to progress in a job in a corporate environment meant that I’d have to fit in with an attitude that being young and striving for a career meant spending evenings and weekends going the extra mile to prove myself. I was struggling to do the bare minimum and never telling anyone how hard I was finding it so as not to be considered weak. I didn’t tell my boss or coworkers how much I was struggling until I reached a breaking point. The combination of workplace stress, my endometriosis reaching the worst it has been and struggling to get access to healthcare during the pandemic – I ended up in a major depressive episode, I lost 12kgs in less than a month and couldn’t work for 12 weeks. I look back and realise that my pain had become intrinsically linked to my stress levels in the workplace. The more I stressed about work, the harder it was to cope with the pain. The more pain I had, the more stress I felt at work. It was a vicious cycle.
What if anything has been the biggest help for you in managing your endometriosis in the working environment.
Asking for help – which was a combination of letting my whanau know what was really going on, speaking to my GP and seeing a specialist – I realised that if you ask for help, it arrives. This gave me the bravery to talk to my work about my health concerns. I asked for it to be private on a need-to-know basis, but I felt such relief and not having to pretend everything was fine. I was offered EAP services and an extended break to focus on getting balance back into my life. This break allowed me to get back on track. While it didn’t reduce my endo symptoms – I had the clarity to cope with it. I wasn’t overwhelmed all the time and I could do more than just work and sleep. I ate healthier and saw a therapist and tried different pain management tactics to get to a point where I would be able to reintroduce work into my life.
What do you feel needs improving for endometriosis patients in the working environment
Financial support is the main challenge, time off is often inevitable with endometriosis and 10 days a year doesn’t even cover 1 day off per menstrual cycle, so sufferers will end up either taking unpaid leave or annual leave – which ends up impacting their ability to take restful time off. Compounding that with the cost of GP visits, specialist appointments, holistic health treatments (dieticians, acupuncture and other therapies), it is easy to spend $200 a fortnight on endometriosis. I am hugely lucky to have a workplace health insurance plan that has allowed me to claim these costs back. More flexible leave entitlements or working hours for employees who suffer from endometriosis will greatly support employees in the workplace. However, the biggest positive impact is from providing health insurance to your employees. They can get the medical assistance they need, avoid long wait times, and recover the costs associated with having a chronic condition. All of this reduces employee absenteeism and presenteeism.
What advice would you give to someone beginning a similar career to you with endometriosis?
Setting yourself some very clear boundaries with work so that you can maintain balance. For me, the hours I work are my boundary, so that I can have a sustainable commitment at work. Living with a chronic condition sometimes feels that you are walking on a tightrope, it only takes working a small amount of overtime to kilter you off balance. When you are exhausted, it is easy to slip into the vicious cycle again. I cannot stress enough how much mental energy it takes coping with endometriosis.
Secondly, I would reinforce that having endometriosis, or any health condition, does not make you less valuable, less talented or less important in the workplace. Wellbeing is thrown around in the corporate environment in the context of stress – recommending a balanced diet and exercise. Wellbeing for someone with endometriosis is not about exercise and eating healthy – it is about having a healthy relationship with our bodies despite what we are going through. Practising self-compassion and building my self-esteem is what made a meaningful impact on my abilities in the workplace. Now, I do not beat myself up for needing an afternoon off if I have severe cramps, and I know that my contribution to work is worth more than what my endometriosis takes away. Comparing yourself to others in the workplace can be very toxic, and it wasn’t until my boss pointed out to me that despite having time off and endometriosis, my employee evaluation was glowing – that I realised I was the one considering myself less valuable – fighting that voice in my head makes me a better employee, and having a boss that supports you makes a huge difference.
Would you recommend disclosing your condition during the recruitment process? If so, why?
I would recommend disclosing your condition in the recruitment process, if the employer/ interviewer has any concerns or a negative reaction, then you know that it is not the right position for you. I have chosen to disclose once I have been offered a position, and I am contemplating accepting the role. That way I know that endometriosis has not impacted whether I am offered a role, but I can gauge whether the environment will suit me. Whatever career you choose, you need an employer that is going to be supportive throughout the journey, unfortunately, endometriosis is a chronic condition and you cannot pretend it doesn’t impact your work – however even with endometriosis, you should feel valued by any employer. You can very quickly ascertain if this will be provided by disclosing your condition.