Toolkit Case Study: Janine’s account of seeking support in the workplace.

I first started experiencing symptoms of very heavy, long and extremely painful periods at 12 years of age.

By the time I entered a corporate workplace environment in the late 1990s my symptoms included permanent bleeding and pain. I was always tired and I always looked pale.

I didn’t tell anybody what was going on, I felt secretive when putting sanitary towels up my sleeve or sneaking them into my pocket to go to the toilet. My workplace was very formal, structured and I was instructed by a manager. Nobody knew how I was feeling and I felt isolated. At this time there was a lot of stigma around periods and ‘women’s problems’. Periods were not often spoken about, so I suffered in silence.

I started working for my current employer in 2006. At this time, I was struggling more and more with symptoms that were still being dismissed as ‘normal’.  I knew this wasn’t normal and, by this point, day to day work was becoming harder to manage. Nobody could tell there was anything wrong with me outwardly, it was hidden.

Shortly after this I changed roles and a new female manager noticed that I was struggling. She noticed me constantly saying, ‘I’m tired, I’m tired, I’m tired’. She noticed I was pale, and the grey colour under my eyes. She noticed me going to the toilet a lot. She noticed that I never had any energy at all. When she asked if I was okay, the floodgates opened for me and I told her everything. She agreed that what I was experiencing wasn’t normal and reassured me that she would help me.

She helped me by being there for me to talk to and by constantly making sure I was okay. She often asked if I needed anything and just looked out for me. She helped me by ensuring meetings were not too long and that meeting rooms had fresh air coming in. She reminded me to make sure I had painkillers, pain patches, plenty of pads – she almost encouraged me to continue to support myself.

Whist the support she gave was amazing; there was still a culture at work that it wasn’t something to speak about publicly.

Sadly, when my symptoms were at their worst, she was no longer my manager. However, she remained a constant support to me while I was privately pushing for more tests and an endometriosis diagnosis. She encouraged me to speak up if I needed anything.

Unfortunately, my new manager was not supportive. At this point, when on a period, I would constantly bleed and sometimes, when it was at its peak, I would be going through a pad every 20 minutes or so. The desk that I sat on at that time was directly in the middle, between the toilets. It meant that whichever toilet I went to, even if I alternated the toilet I went to, I was going to be seen, and it was going to be noticed that I was away from my desk.

One day, while at work, I had a terrible experience. I was on a period and constantly bleeding. Due to not being able to be away from my desk, I had to keep going and going and going. On this occasion I’d left it too long and I’d bled through quite badly, to the point that I felt dirty. I knew I needed to be cleaned up. I’d bled through my pants and my trousers. I’d even marked the chair in the office.

Due to previous experiences, I kept supplies such as wet wipes, extra pads, clean pants, etc. in my car. I just needed to go and get clean. So, I asked my new manager if I could go to my car and to spend some time cleaning myself up. I explained why, thinking I would be supported, but she said, ‘NO’. She just wouldn’t let me go. Instead, she made me stay in work until the end of the day. This had happened in the morning and I still had until 4:00pm left to go. So, I just sat there at my desk, and I had to stay like it all day. I stayed in work and suffered. People around me knew what had happened. Nobody was horrible about it, but just everybody sat in that silence for the rest of the day. My manager completely stripped me of my dignity!

However, things have changed so much since then for the better. Open conversations are now encouraged, support is regularly signposted and occupational health support is provided, with the focus on what can be done to help me.

When I returned to work following my official diagnosis and a challenging recovery, I was referred to occupational health as per standard policy. Once the report was returned, I was taken into the office by my Head of Service to acknowledge what was documented. He mainly wanted to ask me what he could do to support me.

This meant so much to me because generic support was outside of his usual remit. I told him I was spending most of the weekend in bed due to chronic fatigue after working and commuting. In response he told me to work from home on Fridays. When one of his direct (occupational health) reports told me to come in, he found out and he was so cross!

He encouraged me to attend regular support group sessions, even if in work hours, whilst I struggled with finally having a diagnosis. He would always ask how it had gone. He also said his wife had found some information online and that he was trying to educate himself.

This support rippled through the team, and I felt the most supported I ever had. They were constantly checking I was ok without being suffocating or pressurising me. They even encouraged me to take part in an article for endometriosis awareness week.

Local support groups gave me the confidence to speak up and explain clearly what I needed in terms of support, why I needed it and what they could do to help me. I have been able to support others, while also highlighting that ‘reasonable adjustments’ are not just about having a comfy office chair. Reasonable adjustments can take many forms.

Whilst I have more confidence to speak up now and get the support I need, I am aware that many other colleagues struggle. Even now, nearly 5 years after my endometriosis article, I am still approached by colleagues who say they have endometriosis, many of whom are struggling or know someone who is. I would always encourage others to seek support, and it doesn’t have to be their direct line manager – it can be a trusted colleague. As you are likely to be struggling already, take any support you can.

My top three tips for readers are as follows:

1. Understand that reasonable adjustments are more than just a chair – adjustments take on many forms
2. Everyone is different, so be as open and honest as you’re comfortable with in terms of what you need support wise. If people don’t know what you are going through – they can’t help
3. Use support groups outside of the workplace to create a wider support network.

This story is part of FTWW’s My Voice Counts Self-Advocacy Toolkit. To return to the toolkit click here.