How can I get my family and friends to understand how I’m feeling?
Having a long-term condition like endometriosis can feel very lonely, especially if the people around you don’t understand what you’re going through. Many people feel embarrassed talking about periods, and some still hold some very old-fashioned ideas about ‘pushing through’ or ‘women’s troubles.’
Your pain and your experiences are real. Endometriosis is said to affect up to one in 10 women of menstruating age in the UK: that’s as common as diabetes. This means that you and your family or friends likely know other people who are experiencing the pain you’re going through, even though they may not yet have a diagnosis. Talking about it might feel embarrassing at first, but pelvic or period pain is as real and valid as any other pain.
Sometimes, it can help to share your experiences in writing or even drawing. DrawingOut: Invisible Diseases is a project founded by researchers at Cardiff University that uses drawing exercises to help people share their experiences of living with an invisible illness. If your family and friends struggle to understand, it might be helpful to point them in the direction of this website. There are many stories and examples from people whose lives have been affected by endometriosis. You could even submit drawings of your own.
Some people need time and space to absorb new information while others may want to ask more questions. It can be useful to point family and friends to websites that can help them understand more about the condition in their own time. As well as Endometriosis.cymru and the wider NHS 111 Wales website on endometriosis there are a number of charities and organisations whose work focuses on raising awareness, educating and advocating for people living with endometriosis. These include Endometriosis UK, Fair Treatment for the Women of Wales and Endometriosis.org, as well as many others.
It’s also unfortunately true that some people simply won’t understand. This can be frustrating, especially if these are people with whom you have a close relationship. You might find it helpful to speak with people going through the same experiences as you instead. Read more about support groups here.