Endometriosis affects one in ten women and is estimated to affect over 176 million women worldwide. To put this into perspective, if all of those women were to form a country of their own, it would be the eighth most populous country on the planet. Despite the prevalence of this condition, women suffer on average for eight years before diagnosis, primarily due to lack of knowledge or understanding of the illness in the medical community. So, what exactly is it? Endometriosis is a condition where tissue similar to the lining of the womb grows outside of the uterus, on areas such as the ovaries, bowel or the tissue lining your pelvis. It affects every woman slightly differently but common symptoms include severe pain in the pelvic region, heavy painful periods, fatigue and fertility issues.
I began showing symptoms of the illness around the age of thirteen however whenever I brought this to the attention of various doctors I was always told it was completely normal. During my final year at university the pain became so severe that I had to be taken home. A few months after this, I was referred to a gynaecologist who suspected endometriosis. In short, this doctor performed the surgery but failed to find the endometriosis due to lack of knowledge about the illness, and then told my mother she thought I was making the pain up. I was discharged a few hours after my operation with no information on how to proceed. It took me several years after this to find a doctor who believed my pain was real. I finally found a fantastic doctor a year and a half ago who understood the condition and genuinely wanted to help. Due to the pandemic, I waited over a year for surgery but was finally treated in January this year.
During this time, I have also been trying to start my career. However due to the lack of knowledge of endometriosis and the taboo surrounding the discussion of periods, I have worried that employers would become hostile or hold prejudice against me for the impact my symptoms could have on my daily life. I have been very fortunate so far to have not experienced this, with each of my employers and managers sharing common themes that have made me feel comfortable in my workplace. I have also found several strategies to help manage my own suffering and ensure I put my best self forward to help me succeed.
Before discussing how the workplace can be endometriosis friendly, it’s important for a sufferer to know how to help themselves to thrive despite their condition. These are a few tips that I have found help me to perform my best and demonstrate my capabilities, whilst also managing my symptoms.
I understand that talking about pelvic pain and periods can make a lot of people feel uncomfortable and it’s completely understandable, the subject has been taboo for centuries and that can’t be changed overnight. However, so your employer can best help you, it’s important for you to communicate effectively how the condition impacts you and if there’s anything they can potentially do to help. This could be as simple as having a quick chat with your manager to tell them what’s going on and how it affects you. This is something that I have done with each of my managers in my roles to ensure they know that I’m trying my hardest but occasionally it can become challenging. I personally believe that it is also incredibly important to manage your employers expectations and highlight the lack of knowledge surrounding this condition, making them aware that it’s not simply a case of going to the GP for advice or medication, and that there is no quick solution.
The key to succeeding in anything is to be motivated and with endometriosis there is another layer of motivation required. You have to want to try and find ways to cope and actively research alternative methods to help yourself. This includes being organised and planning your life or workload as best you can. I know that each woman’s circumstances are different, so this might not be for all, but for those who can it’s really great to research non medicinal coping strategies like exercise, diet changes or supplements. We can’t rely on others to save us and by trying to help yourself you always know that you’re doing your best to succeed despite your condition, in turn giving yourself the confidence to keep going.
Endometriosis affects each woman differently but by learning to understand what your body needs, you can optimise your efficiency with tasks at home and at work. For example, I taught myself to be able to assess myself in the moment and I will restructure my day accordingly. I will evaluate how I’m feeling and if I feel energetic, and able, I’ll work on a more difficult task. But when I’m feeling more drained I’ll pick something easier or more monotonous. I’ve found this to be a useful method to ensure my work is always complete on time and to the best of my ability. In cases where the pain is too much and pushing yourself is making the situation worse, it’s about acknowledging that you need a break and giving yourself ten minutes to half an hour to have a lie down or to go for a walk, whatever you know your body needs to give you the boost to keep going.
There are many ways employers can support their employees and below I have listed a few of the ways my past and present employers have supported me. Having support in the workplace has always been something that I’m very grateful for as I know not all women have it. My employers have allowed me to thrive despite my health not being optimum and this has given me the confidence to prove how much I’m capable of and not let my health hold me back from achieving everything I would like to.
Having an employer who is accepting and understanding has really helped me feel comfortable talking to them about any issues I have faced. I have been able to say whenever I needed some time to rest without fear that I would be treated like an inconvenience or a nuisance. Acceptance without judgement is incredibly important and the notion that a sick employee is ‘taking advantage’ needs to be left behind for people to feel comfortable enough to talk about what’s really going on. After all, if an employee is able to take the time they need to rest, they will return to work with more motivation, working more efficiently and benefiting the company in the long run.
Endometriosis has no cure or proven symptom management, and due to the lack of research it can take time for a sufferer to find the best way to manage their symptoms. This can be incredibly frustrating for a sufferer as they worry that they are underperforming whilst trying to find the solution that should make their lives easier in the long run. I have always found that having compassionate employers has relieved some of the stress and guilt I may feel when trying to find a pain management solution. Knowing that I have a supportive employer has alleviated the fear that I might lose my job and has always helped me recover faster as I am better able to manage the stress of the condition.
For someone like me, working from home has been incredibly beneficial even prior to the pandemic. No commute on public transport has helped reduce the additional stress on my body and if I’m in a lot of pain I don’t have to worry about wearing the uncomfortable but professional clothes required at most workplaces. Working from home also means I can use my hot water bottle or TENS machine (for more information see below references) freely and if I need to take five minutes to stretch to alleviate pain and improve my efficiency I’m able to do so. Prior to the pandemic I was lucky enough to have employers who saw the benefit of working from home and how the option could help someone like me still produce work to a great standard. I hope post-pandemic this will continue to be an available option for all employees.
A final method that I have found supportive in the workplace has been flexible working hours i.e. allowing for early or late starts and finishes to the day or making up time missed for an appointment. The flexibility has benefited me greatly as I find the hardest part of my day is the commute on the tube/ bus, to and from work during rush hour; particularly on days when I am in a considerable amount of pain. I’d often find myself unable to stand on public transport due to the motion causing extra pressure on my body and making the pain worse, so I started leaving for work an hour earlier and sometimes waiting over an hour after work, just to miss the rushes. Previous employers have taken this into account and have allowed me to shift my day to start and finish an hour earlier, but the option could also be applied to a later start and finish. The work is still completed and to the exact same standard, but with just a minor modification to my hours.
Flexible working also includes the option of making up time out of business hours where possible. This has meant that when I have an appointment, I am able to attend without needing to take annual leave. This is helpful as I can’t always control when a medical appointment is booked for me and I am restricted to the hours of doctors who, quite rightly so, don’t often work evenings or weekends. My employers have always taken the approach of “so long as the work is completed” which seems to be the forward thinking approach allowing employees to be efficient or flexible to their personal needs.
For companies interested there is an ‘Endometriosis Friendly Employer’ Scheme which details how employers can help sufferers which also demonstrates to future employees that an employer supports and understands conditions such as this. More information on this scheme and other techniques of support can be found on the Endometriosis UK website.
Endometriosis UK Website: https://www.endometriosis-uk.org/
TENS Machine Pain Relief Information: https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/
Hero Image source: https://www.daysoftheyear.com/days/endometriosis-awareness-month/