Why I Spent 12 Years in Silence About My Endometriosis

Honestly, that’s a loaded question, but I think it’s important to talk about because staying silent is no longer an option. It’s scary to talk about because sometimes it feels as if there is a lot at stake. Hopefully this will make it easier to understand why so many women struggle in silence:

1. It’s an invisible illness. Just in case there’s any confusion, I want to clarify that invisible does not mean imaginary. Invisible illnesses are ones that are not evident just by looking at someone. Doctors can’t even see endometriosis unless they view the pelvic cavity laparoscopically. It’s difficult to explain your disease to someone who has no idea how you feel. It’s quite intimidating actually, and sometimes it’s just not worth the effort. I used to find myself downplaying my symptoms because words tend to fall short in explaining what it’s like.

2. The period stigma. We’re all aware of it, right? It’s super “gross” to talk about your period. No, it’s really not. You can talk about it while being considerate of others. Like in a “Hey, I’m on my period and it feels like a giant T-Rex is shredding up my insides and I need to go home” kind of way. Endometriosis is not a disease that only affects women during their period, but that tends to be when symptoms peak. I often find myself lying to spare people from knowing that I was sick because of my period due to the stigma that still exists around menstruation. I think it would be much easier for women to be open about having this disease if everyone could just stop thinking that periods are gross.

3. I feared how others might view me. I don’t want to look “weak.” No one does! For those who haven’t experienced the pain that is brought on by endometriosis, it might be easy to assume that maybe we just have a low tolerance for pain. That couldn’t be further from the truth. I’m in pain more days than not, and most of the time I face those days with a smile on my face. On most days I push through it even when I want to curl up in a ball. Women with endo are some of the strongest you’ll ever meet. I stopped caring what others think of me because they don’t know what it’s like to have this disease. That’s why I became passionate about spreading education and awareness. You can’t expect society to understand if you’re not willing to talk about it!

4. My career. I’ve read about so many women who have lost jobs due to endometriosis. Either from being fired for needing too many days off, or having to quit due to increasingly severe symptoms. This has always been a huge fear of mine because I’ve worked so hard to get where I am. I fear the financial stress that my family would endure if this happened to me. I’ve stayed silent for so long because it feels as though my livelihood is at stake. I’m learning to be more open about my struggle at work, but it’s going to take some time before I feel completely comfortable in doing so.

There are many reasons why I felt the need to stay silent about my disease. I know many women with endometriosis face the same issues and are forced to struggle in the dark. Speak up, talk about the embarrassing stuff and put your superhuman strength on display. I think you’ll find that others will be more understanding than you expect!

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