Can you tell us a bit about your story?
I did a law degree and moved into legal recruitment. I worked in Sydney for 3 years and joined Ashurst’s in house recruitment team in London in 2019. My team focusses on recruiting qualified lawyers in to the UK offices of Ashurst.
Alongside my career, I have suffered with endometriosis for a long time. The painful symptoms became unbearable when I was at university, but I can see that the symptoms had been with me much longer than that.
What is Endometriosis?
Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb are found elsewhere in the body. This results in a range of symptoms including chronic pain and fatigue. 1 in 10 women suffer from the condition and the average diagnosis time is 8-10 years. This isn’t a criticism, it’s such a complex condition and it presents in so many different ways that it must be difficult for medical professionals to pinpoint it. The only way for a true diagnosis is through keyhole surgery and analysis of sample tissue, which doesn’t show up on a scan.
The most difficult part of the journey can be going to your GP as there is a lack of awareness and some people find themselves dismissed. For me it took over 6 years to go and see a doctor to talk about the pain.
Since I was referred to a specialist, I have had 7 keyhole surgeries along with some related surgical complications. Everyone has a different and unique story with endometriosis, including the impact on fertility, and there is no cure for it. Those of us with the condition may need to have a hysterectomy, but that is not a cure. We may also have a range of pain management options, hormonal therapies and treatments.
What was the impact on your work?
It has definitely had an impact on my working life. It is a very unpredictable condition, one day you can wake up and you are floored by the fatigue, you have no energy and have so much pain you can’t get out of bed. Another day I might be fine and able to go for a run. I’ve been very lucky to navigate my career around my pain but the sad reality is that some women have to give up their careers because they struggle.
No illness is predictable, but endometriosis is permanent. You might get a cold at a bad time at work, but you get over it in a few days. But with a long term condition, it is always there, it always comes back.
The physical side of things you can get used to but the impact on mental health can be severe. You lose your drive, you feel embarrassed and you feel like a burden on friends and colleagues. You can feel like you are always moaning. I am aware that some people find it difficult to grasp that maybe yesterday I was great, but today I can’t get out of bed.
Add to that the fatigue and brain fog that comes with any long term condition can make you feel disconnected from life.
How easy was it to share your condition or ask for help at work?
I’m very open about it, which makes my work life easier. I am confident and comfortable to bring the topic up. However, not everyone feels that and that’s ok, it’s your personal life. I’ve had some very supportive line managers in my career but not everyone has that relationship with their line manager.
I believe that everyone should be allowed to do their job if they have the drive, the talent and the capability. This is where the onus is on the organisation to build a culture where people feel able speak up. Many firms offer workplace adjustments for long term conditions but it can be hard when you have an invisible illness or condition. Add to that the fact that women’s health is still something of a taboo subject, it can feel very personal to talk about – we don’t all want to talk to a male line manager. And even very supportive managers may not feel comfortable talking about women’s health. In this situation I think we should always look at people’s positive intentions even when they don’t always say the right things or want to discuss details.
What motivated you to set up your support group, Don’t Carry it Alone?
It wasn’t a planned venture at all! I had surgery last year and when I was alone in hospital, recovering from the surgery and from some significant news from my medical team, I put a photo of myself in my hospital bed on LinkedIn. I’d never done that before, it was most unlike me. And when I woke up 60,000 people had seen that post. I was overwhelmed. I had over 100 messages from women all over the world saying thank you for being so open and honest. Also a number of Ashurst colleagues got in touch – women I had been in meetings with, and yet I didn’t know that they were living with the same condition.
As I was talking to a lot of women about this while I was on medical leave we realized there was a need for an informal safe space for other people who truly understood. Don’t Carry it Alone is the group and it was born from those conversations.
Other women asked if we could make it about other equally invisible conditions, which I was happy to do, and I’m learning about other conditions as a result. We’ve set up a support group via LinkedIn, and we are starting to create a network. I’ve big plans for what we could provide, including webinars, podcasts and newsletters. My ultimate goal is to develop employer training around supporting employees with chronic pain.
How can employers improve their support for team members with a long term health condition?
Organisations should ensure their culture means that employees feel comfortable raising their situation of living with a long term chronic condition. If the values of an organisation are supportive, that is a great place to start. Then there are formal and informal things they can do.
Formally, endometriosis is not classed as a disability, even though it is a chronic condition. I believe that when firms are working on their disability and inclusion plans or their mental health programmes, there should be specific mention and consideration for people who have a chronic pain condition. In addition I think support groups can be very effective. And training, not only for your People and Culture team, but also to every line manager, is so important.
Informally, when you are a line manager it is important to make sure you fully support your team’s personal life so people are able to speak to you.
From a recruitment perspective, you should ask if people need reasonable adjustments, but it really is up to the individual if they want to share any details. Their response many depend where they are in their journey, and of course they may not want to share.
What advice would you give to anyone in a similar situation?
My overriding advice is to try and find the level of support in your personal and professional life that you are comfortable with and that allows you to live your life.
Are there any organisations that you would recommend for support at work?
Endometriosis UK have an employer friendly scheme which is very helpful, I would encourage employers to look at their resources:
Peppy do a lot of work around menopause, infertility, fertility treatments and they have support for endometriosis within their fertility resources. They have an app and firms can use their service as an employee benefit
The government is working on a Women’s Health Strategy for England so there are options to engage with this
And finally, anyone living with a long term chronic condition can seek support through Don’t Carry it Alone.