‘Not only does having endometriosis severely impact my working life but also my social and love life. I often call up work sick, not because I just feel like having a day off, but because I feel so sick to even get out of bed in the mornings. Calling up sick makes me feel guilty because my boss or co-workers don’t always understand what I'm going through and often think I'm letting them down. I always try my best to achieve at work even when my symptoms are so crippling.
All I want is to be able to show up to work every day with a big genuine smile on my face. I do not enjoy having days off work as I would rather be working towards my career and earning a good income to support my family. When I need to cancel going to family gatherings or catching up with my friends it’s not because I don’t want to see anyone or spend time with loved ones it’s because I feel too sick to leave the house. Sometimes, well most times actually, I do not want to leave the house let alone my bedroom because I can’t be bothered putting on a brave and fake smile when deep down all I want to do is cry. It’s a lot easier to just stay in bed and hide than to go out and feel guilty and feel like I'm going to ruin everyone’s fun.’ -Sarah H, ELANZA Endo Patient Panel
Endometriosis not only has an effect on individuals but the larger economy, endometriosis is estimated to cost the U.S. economy $22 billion annually and the global economy $70 billion.
Aside from the financial impact endometriosis has, a study reported that individuals with endometriosis have a weekly loss of around 5.3 hours.
A diagnosis of endometriosis can feel overwhelming, leaving you with lots of questions about who to tell.
You may be concerned about how people will react. What will they ask you? Will you know how to answer them?
Because endometriosis is different for everyone—and everyone has different communication styles as well as different dynamics with the people in their life—there’s no one way to go about sharing your diagnosis.
Here are some basic strategies you can keep in mind to help guide these conversations.
Explaining endometriosis
Even if the person you’re talking to has an idea of what endometriosis is, it may be helpful to provide an overall explanation.
Having a list of points in front of you can help you keep your ideas clear if you get nervous and start to lose your train of thought.
You can talk about how in your body, there’s tissue that typically lines the inside of the uterus.
But for some individuals, some of that tissue grows outside the uterus as well. You can say that when this happens, it’s called endometriosis. And this is what you have.
Explaining endometriosis symptoms
After you’ve talked about the basics of endometriosis, a good next step is to discuss the symptoms.
You can explain that endometriosis can cause pelvic pain, excessive bleeding, and in some cases, difficulty getting pregnant.
This is a good time to explain that the symptoms (and the severity of symptoms) vary from individual to individual.
Depending on who you’re having this conversation with, you can decide how much detail you want to go into about your specific symptoms.
Explaining endometriosis treatment
The person you’re talking to may be eager to know if there’s a cure for endometriosis.
You can be straightforward by explaining that while there’s no known cure, there are many treatment options available that may help reduce symptoms, slow disease progression, and prevent complications.
You can explain that you’re continuing to work closely with your healthcare team.
Sharing with your partner
Your partner may have been with you on your journey toward diagnosis and be familiar with the symptoms you’ve been experiencing.
Or you may just be starting to explain. Either way, it’s important to keep conversations open and honest. Your partner may be eager to know what they can do to help.
This is a great opportunity for you to ask for patience and understanding, explaining that some of your symptoms could interrupt your plans from time to time.
You can suggest quiet activities to enjoy at home (such as watching a movie or playing a board game) if your symptoms act up.
You can also mention that there may be instances when intercourse is painful, that this may be common during certain times of the month, or that it may be unpredictable.
Expressing yourself honestly—and also acknowledging your partner’s feelings—is important for you both.
Since endometriosis may make it harder to get pregnant, you’ll want to have a conversation at some point if you plan to start a family.
But like with so many things related to endometriosis, your healthcare team or coach can help answer questions you and your partner may have, as well as recommend treatments.
Sharing with your employers
Despite the fact that endometriosis is thought to impact around 10% of all those assigned female at birth (AFAB), the condition – which sees cells, similar to the ones in the lining of the womb, found elsewhere in the body, causing a myriad of symptoms – is still widely misunderstood.
Given that endo flare-ups can be unpredictable, many sufferers can also find themselves worried about needing to ask for (or indeed take) time off from work when they're unwell, or if they need surgery (something that many do - in fact, a surgery known as a 'laparoscopy' is the only way endo can be diagnosed).
Many with the condition report having concerns that their boss or colleagues might think they're 'slacking off' due to having to take sick leave, but that couldn't be further from the truth – and, let's face it, that additional stress is the last thing you need when you're already dealing with symptoms ranging from chronic pain to extreme fatigue…
It’s really up to you how much you choose to disclose to your employers. There may be certain times of the month in which you experience pain or excess bleeding—and you may come to know when to expect these days, based on your menstrual cycle.
Therefore, you may want to talk with your boss about working out a schedule where you work remotely or stay home during these days.
For some, the onset of symptoms throughout the month may be less predictable. In this case, a conversation right from the start may be explaining that you have a condition called endometriosis—and it can cause painful symptoms at unexpected times.
‘At first, I felt shame and embarrassment sharing my diagnosis with my manager but it was one of the best things I could have done for my work-life balance. My manager and I worked on a flexible work-from-home plan for days where my flare-ups are awful’ - Sally B
You can direct them to resources if you don’t feel comfortable going into detail (this applies to anyone you’re sharing your diagnosis with), and you can also tell them your healthcare provider can provide further information if needed.
If you are looking for additional support managing relationships, lifestyle, and symptoms while managing your endometriosis you have come to the right place.
You should feel safe and supported, every step of the way
At ELANZA, we're building a safe place where you can be heard, understood, heal and develop a toolkit to help you navigate your diagnosis.
We'll put you in the driver’s seat to take control of your endo, through a simple and accessible, yet comprehensive ecosystem of physicians, experts, community, coaches, care navigators, physical therapists, classes, products & services.
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