Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey. — Glenn Schweitzer
Living with endometriosis is a constant battle, particularly when it comes to managing symptoms like pain, fatigue, and brain fog while juggling the demands of a full-time job. Each day becomes a negotiation with myself, deciding when to take sick leave and when to power through despite the overwhelming challenges. However, the fear of judgment and the stress of appearing lazy or disinterested in my job often weigh heavily on my mind.
In my previous job, I encountered a senior colleague who undermined my struggles with endometriosis symptoms, although I must mention, I hadn’t been diagnosed then. Despite battling excruciating pain and undergoing surgeries, she made me feel as though I was overreacting or being dramatic. This experience left deep emotional and mental scars, causing self-doubt and questioning the validity of my own pain. It reinforced the need for education and awareness surrounding endometriosis, especially in the workplace.
Understanding the South African labour law, which allows for 30 to 36 paid sick leave days within a three-year cycle, presents a challenge for individuals dealing with chronic illnesses like endometriosis. The allocated sick leave may be exhausted quickly, leaving little recourse for further absences due to the illness. This puts added pressure on individuals to manage their symptoms while juggling work responsibilities. It highlights the need for companies to consider more flexible policies that accommodate chronic conditions and the unique challenges they present.
Being open about your condition with your manager and team can be instrumental in minimising judgment and assumptions. Sharing your journey with endometriosis allows for a better understanding of your challenges and helps combat the misconception of laziness. Having a supportive team and employer can make a world of difference for those battling endometriosis. I am fortunate to have encountered understanding colleagues who value my contributions and empathise with my struggles. Their support, both emotionally and practically, has provided a lifeline during difficult times. It is crucial for employers to foster a culture of compassion and flexibility, where your needs are acknowledged and accommodated, thus allowing employees to prioritise their health without fear of judgment or repercussions.
The relentless symptoms of endometriosis, including brain fog and chronic fatigue, can take an immense toll on your mental and emotional well-being. At times, the burden has become so overwhelming for me that resigning from my job seemed like the best and only solution. The feelings of inadequacy, uselessness, and being a burden to your team can be incredibly disheartening. However, the love for my job and the financial necessity constantly pushes me to persevere, seeking ways to manage my symptoms while maintaining my professional commitments.
As you know, managing endometriosis often involves relying on medications to alleviate symptoms. However, some medications can induce drowsiness, making it challenging to focus on work tasks, think clearly, or fulfil daily responsibilities. This added complication further emphasises the need for understanding and flexibility from both your employer and colleagues. Often times, I find myself having to make a choice between having to take very strong pain killers during my work day and working at a slow pace due to drowsiness, or enduring the pain and working at a slow pace due to needing little breaks to cry and find different positions that may offer comfort. It’s a constant catch-22 situation.
Something that I’m always grateful for is the privilege to work from home. Working from home offers a multitude of benefits for individuals with endometriosis. It allows for increased flexibility in terms of scheduling, start times, and the opportunity to incorporate essential rest periods throughout the day. Moreover, not having to deal with the daily commute to the office eliminates the physical strain and fatigue associated with travel. And for someone like me who struggles with morning grogginess, particularly during cold winters, the relief of not having to wake up in the early hours can significantly impact pain levels, mood, and overall productivity. If working from home is not currently an option for you, consider discussing the possibility of occasional remote work days with your manager or employer.
It's crucial to acknowledge and express compassion for individuals who do not have the option to work from home or who hold labour-intensive positions. Their challenges are often amplified, and the need for support and understanding becomes even more critical. In my endometriosis network, I’ve come across ladies who are teachers, who work in retail and other labour-intensive roles. My heart aches for them, as they share their struggles with us. While the focus here is on working remotely, it is essential to recognise the diverse experiences of those with endometriosis and advocate for inclusive workplace policies that address the specific needs of every individual.
This week, I discovered a glimmer of hope in the form of an endometriosis policy being drafted by my employer. This initiative aims to provide support and accommodations for individuals suffering from endometriosis. The anticipation of seeing the final policy and its subsequent implementation fills me with excitement and optimism for a future where those with endometriosis can navigate their work lives more effectively and without undue hardship.
Navigating the daily battle of endometriosis symptoms while maintaining a fulfilling career is an ongoing journey filled with unique challenges. The constant negotiation of sick leave, the emotional toll of being misunderstood, and the limitations of existing policies can be overwhelming. However, the support of a compassionate team and the promise of a forthcoming endometriosis policy bring a ray of hope. While working from home also offers tremendous advantages in terms of rest, flexibility, and reduced fatigue, we must remain empathetic to those without this option. Let us continue to raise awareness, advocate for change, and work towards a future where individuals with endometriosis can thrive in both their personal and professional lives.
Signed,
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