Here’s Why I Participated in #WhatIWishILearned

Endometriosis UK is a charity that I have turned to on more than one occasion. I particularly like using the Health Unlocked forum – an online forum where you can connect with others suffering from Endo, ask questions, and get experience-based answers.

I also follow Endo UK’s social media pages and I often find myself sharing relevant content on my personal pages in hopes that one of my friends or followers realize what it is like for those of us who are living with this awful, never-ending disease. So when the new campaign launched, I jumped at the chance to be really involved.

The new campaign was titled “#whatiwishilearned” and its main goal was to raise awareness about Endometriosis, in addition to highlighting false statements OBGYNs and doctors tell patients about their menstrual cycle. (Remember: Painful periods are not normal.) 

The average length of time for a diagnosis in the UK is seven years.

Endo UK asked its followers to share a selfie or a quote with the above hashtag and a caption explaining what it was they really wished they’d learned about periods/menstrual health on their Endo journey. I submitted the following post:

I was so pleased to see my post was featured a couple of times on Endo UK’s official Instagram.

To my surprise, the charity contacted me directly and asked if it would be okay to feature my post on the Facebook and Instagram pages, too. I was asked to provide a picture of myself and was told it would be released within a few weeks. I was over the moon, but at the same time I felt slightly nervous – did I really want everyone to be able to put a face to the words I’d posted?

If you know me well, then you’ll know I am selective of who I tell about my Endometriosis (along with my other conditions), because quite often I have been judged or faced with a sheer lack of understanding. It’s one thing to share a post that is not connected to me or to raise awareness in a sneaky, anonymous sort of way – the majority of my Facebook friends just scroll right past my posts because I am far less interesting than the other accounts they follow – but having my face posted next to something that clearly states: “Hello, I have Endometriosis and I talk about my periods!” is totally different.

I even have two separate Instagram accounts.

One of my accounts is a personal account, while the other is for people like me who are chronically ill) because I found (whenever I’m using my personal account) I can never be honest about how I am feeling or talk about my conditions openly.

Luckily, I plucked up the courage (thanks to the amazing support from my husband) and I sent a photo. A few weeks later, my post was live on Facebook as a public post for all to see. My face is even now at the top of the Endo UK page in the photos section. (Oh, God!)

I decided to go one step further by sharing the post on my personal Facebook page.

I’m writing this article because I think it’s interesting how hesitant and nervous I was by the thought of people reading about my condition. It took me quite a bit of courage to share my feature and then, even more, to write about it on my personal page, but I don’t know why that is. I suspect it’s because people like me (people like us) face stigma and judgment. (I think it makes it worse that Endometriosis is a disease about periods – and God forbid we talk about those!)

But then I realized if we stay silent the stigma and judgment surrounding us will never end, and girls will continue to receive delayed diagnoses.

So, I feel proud of myself for opening up to a load of Facebook friends (weird how they are called that when you and I both know it’s only the handful of close, true, and amazing people we really consider as friends) who could easily take one look at me and say I look perfectly “normal and healthy.”

Do you know what the outcome of my sharing it was? Support. Lots and lots of support. Lots of likes and comments and people sending me so much love (even those who I had not spoken to in years) – I even had a small string of people I didn’t really know sharing my post.

I participated in this campaign because I wanted to show people what it’s really like to have Endometriosis. I think it’s so important to bring attention to the suffering and awful symptoms we’ve all been forced to experience. (Remember, even though someone may be smiling in their photos, we don’t really know what his or her life is like.)

I encourage everyone who’s comfortable doing so, to get involved with campaigns like the ones Endometriosis UK often run because you never know who you might help out. And, I guarantee you’ll find that there is an endless supply of love and support just waiting for you.