What I want to say to all the future women
I have always been a big believer that everything happens for a reason. Even now, as I decide which pain medication to use for the degree of suffering I’m in, I still feel as though my grander purpose in life is to educate other women about endometriosis; this is why I am going through all of this, isnt it? In my attempt to teach young women about endometriosis, I have done all the millennial things to do:
- Create a blog? Check.
- Create an Instagram account? Check
- Create a twitter account? Check
- Network with others who have endometriosis? Check
- Keep active on social media? Check
- Be relevant?… Check?
I am expanding my network and learning from others who suffer from endometriosis. I am sharing their stories and I am participating in discussions. But then it donned on me last weekend that I’m not connected to the people who need me the most: the young women who are starting to have period pain and don’t yet know that its NOT NORMAL to have painful periods. These women are either too young to talk about periods with their friends, or they are old enough that their friends are tired of hearing them complain. These women are either too shy to speak up about their pain and are suffering in silence, or they are connecting with other sufferers over social media and none of them are the wiser to their crying bodies. These women either have older women in their lives who don’t understand or cannot comprehend painful periods, or they have older women in their lives who have trudged on in painful silence their whole lives, chalking it up to ‘what women do’.
Starting small, I figured that living in Canada there must be some advocacy group barging through the education system informing these women about ovarian cysts, endometriosis, PCOS, Adenomyosis. Sadly in my endless google search I found a few websites hosted by ‘associations’ and ‘foundations’ that merely had a placeholder page for education. I found pictures from endometriosis society walks and gatherings. But nowhere could I find a single education advocacy group. I could not find any rallys or petitions in Canada to change the allocation of funding towards research and development in these areas. Nowhere (In Canada) could I find someone standing up to stop this silence.
So I took it upon myself one Saturday morning to do a simple twitter search on ‘painful periods’. It was astonishing and heart breaking to me the amount of women who are silently screaming about the pain they are enduring month after month. Some women tweeted things like “I guess painful periods prepare us for pregnancy” and “period boobs are hot but damn are they sore”. These women are keeled over, snuggled with heating pads, choking down pain killers, assuming this will be the rest of their lives. Some of their friends concur, others don’t even tweet back. Selflessly (or perhaps selfishly) I began tweeting each and every one of these women, telling them they should go talk to their doctors about endometriosis and to check out my blog. At the end of a 3 hour spree, I had one ‘like’ back, but the rest remained in silence. And I continued to be heart broken.
For the last 4 days I have intermittently thought about these women, and thought about ways in which I am to connect with them; and women like them. I have spent an uncanny amount of time reading other blogs, advocacy happening in other countries, and am crushing Abby Norman’s “Ask me about my Uterus”, hoping these will give me ideas.
In the age of social media I thought my adult millennial self was doing everything right. I thought my Instagram account and twitter were going to blow up my phone with women begging to talk to me, begging to have me listen. Instead my social media gradually climbs in followers and I feel as though while I continue to learn from my endo sisters on how to better prepare for my own journey, I have not yet left a mark on the women yet to discover their future selves.
Then I ask myself, what would I say to these women if I had the chance? I would say, ‘sorry you are going through so much pain, but I need you to understand this is not normal. Your friends do not understand because they barely know they are bleeding every month; its as casual for them to change their tampon as it is for them to brush their teeth’. I would say ‘I realise that knowing you may have endometriosis doesn’t take away the pain, it doesn’t provide you with new tools to prepare for fertility, in fact it doesn’t even impact you one way or another. But sometimes, knowing what’s causing the pain is half the battle. And hopefully in 5 years we will have better ways of diagnosis endometriosis without surgery. Maybe in 10 years, doctors will believe us when we say we are in debilitating pain. Maybe in 15 years all of the doctors will know what endometriosis is, and what causes it. And maybe in 20 years a strong and bold and beautiful woman will have fought for a cure. Not THE cure, but the start of the focus for a cure’. I know it’s not much, and to some it may seem like such a waste of a life goal. But to me, I just need to know that during my struggle with endometriosis I made a difference in someone else’s life. That I changed the way some nay-say’er felt about endometriosis. That I shifted someone’s focus about women.
I write this entry mainly as a way to relieve the stress I have been feeling about tackling a problem much larger than one person can handle. But deep down, I am hoping someone reads this, and helps me identify ways in which we can start small, and gradually educate ladies all over the world about the female diseases that get little attention.