‘It ruined my life for two decades’: How employers can support adlanders living with endometriosis

This week is National Endometriosis Week in the UK. One in 10 women of reproductive age suffers from this debilitating disease, and, as women account for just over half of all adlanders (IPA Census, 2020), a significant part of our industry will be affected. Perhaps you have an endometriosis sufferer in your team or your department. You probably don’t know about their illness or the extent of it. But you need to, because they need your support.

For years, I was one of those women. Endometriosis ruined my life for just over two decades. I know firsthand that not enough employers know about endometriosis or its hideous physical and mental effects. This has to change.

Endometriosis is a cruel disease that deposits cells similar to the ones in the lining of the womb elsewhere in the body. Each month these cells break down and bleed along with a period. This results in agonising pain that rendered me incapacitated for a full day each month. Some women’s endometriosis attacks last for longer.

There’s a long list of traumatising side effects and other symptoms to contend with too. From the physical—fainting, fatigue, vomiting and bowel and bladder issues—to the continuous emotional damage and tortured exhaustion of suffering from chronic pain. I know, because this was my life from age 12 for more than two decades. My wellbeing was in tatters.

You would think, given the severity of the disease and the number of women who are affected by it, that employers (and educators) would be fully informed about it and therefore able to support women suffering from it. Frustratingly, this isn’t the case. In fact, even the slew of doctors that I went to failed to recognise the symptoms. It took 10 excruciating years to get a referral to a gynaecologist, resulting in a long overdue diagnosis.

So how can you start to reach out and support women in your teams who are suffering from endometriosis? Annabel McCaffrey, head of support at Nabs, says the first step is to create a culture in which people feel able to share their health conditions: “Create a safe space where people can share what they’re going through in the knowledge that they will be listened to and, crucially, asked what support they need. Don’t make assumptions; ask people how they can best be supported by their colleagues, managers and senior staff.”

Getting consent from people to share their health issues may mean having policies in place—a disclosure policy, for example. But creating a safe space makes it more likely that endometriosis sufferers will be open about what’s going on for them, which then makes it easier to manage them and provide essential support.

The never-ending cycle of pain and anxiety took its toll on my mental health. This was compounded by the lack of understanding and support from those around me, particularly once I started my career.

Even after I’d been diagnosed, operated on and pumped full of various hormones (to no avail), employers failed to take me seriously. In one job, I remember being doubled over in agony, having asked to leave early, being asked to complete one more thing before I left for the day. I was in such pain that I could barely speak.

Annabel advises: “Managers need to understand that the distress triggers include people not appreciating how seriously impacted the person can be, as well as the distress created by the pain itself. This could also lead to endometriosis sufferers hiding the real reason behind their pain, which will cause extra anxiety.”

Provide the right support, and you can also ease the logistical load as well as the emotional one. An endometriosis sufferer can pinpoint how they’ll be affected on certain days. Annabel says: “Empower the affected individual to share this with you and together you can work out how best to support them, for example with flexible hours and hybrid working on challenging days where work may still be possible. On days when work isn’t going to be possible, knowing about these in advance can help you to plan around them—avoiding big deadlines, for example, if that’s a possibility.”

There’s expert help available for endometriosis sufferers and their employers looking for more support and guidance. Endometriosis UK has launched a scheme to help employers become “endometriosis friendly”. Meanwhile, Nabs’ Advice Line can help sufferers to explore support options, whether that’s guidance on how to broach the topic with employers or referral to a course of therapy sessions to help with the emotional load.

And, as someone who lost 20 years to endometriosis, this is my plea: seek out support if you have it, and support endometriosis sufferers in your team. Compassion and understanding can make all the difference.

Louise Scodie is senior PR and communications manager at Nabs.