The Mental Toll of Endometriosis

Living with a chronic illness is difficult. It impacts so many aspects of your life. I’ve struggled with work because I had to take too many sick days due to flare-ups of endometriosis. I’ve struggled with my relationship because the pain I was in meant I couldn’t have sex as much as my partner wanted. And I’ve struggled with friendships as the endometriosis made me unreliable. I had to cancel too many plans at the last minute due to a flare-up or simply fatigue.

But for most of us, endometriosis takes a heavy mental toll as well. And this starts well before we even receive our diagnosis.

The challenges of getting an endo diagnosis

Reading our members’ stories about their journey with endometriosis, one theme always stands out to me. The majority of endometriosis sufferers have had to battle for years before anyone took their pain seriously. It’s bad enough when the doctor - a health professional whose job it is to “fix” your health problems - doesn’t think your symptoms warrant any further investigation. But when your own family, or even your own partner, doesn’t think your pain is as bad as you “claim” it to be, that can be very damaging.

Many people don't believe us

Telling someone that their experience isn’t real, or isn’t as bad as they make it out to be, is called gaslighting. It’s a well-known abuse tactic. I’m not saying that family and friends who tell us that we exaggerate our pain are deliberately abusive, but not acknowledging our lived experience with endometriosis puts an additional burden on us which we don’t need. When you are in severe pain because of a disease that is ravaging your body, you need to feel supported, not disbelieved.

My family treated me like a drama queen when it came to my periods. None of my sisters, or my mother, had painful cramps during their periods, so they couldn’t understand my pain. And because they didn’t understand it, they didn’t believe it could be that bad. Time and time again I was told to stop whining and get on with life, even as I was unable to walk because of the pain.

Endometriosis is a real and devastating illness. It is hard enough to deal with the pain, the fatigue, the IBS-style symptoms, without having to fight for our own truth. As endometriosis sufferers, we are the experts on how much pain this disease causes. If you are reading that as a family member of an endometriosis sufferer, I have one message for you: Believe us when we tell you how much pain we are in. Support us, even if you don’t understand our issues.

This pain is real

Endometriosis is an illness that affects us both physically and mentally. Gaslighting is a damaging tactic that can have long-lasting effects. It erodes our confidence in ourselves. If you feel like this applies to you, know that you’re not alone. Your experience of endometriosis is valid and real. The pain is real and excruciating. Endometriosis.net is full of women who have similar experiences and we believe you and we will support you.