I opened an email to an awkward explanation as to why I was no longer required to speak publicly about my experience with endometriosis. Though they danced around the subject, their meaning was clear: I don’t want children, so infertility isn’t on my radar and I’m managing my endometriosis well.
They wanted someone who was struggling to conceive, and were in the midst of their battle with endo.
A story about someone living well with it?
Well, that just doesn’t sell.
This email was not unlike other conversations I’ve had. Many journalists have jumped at the chance to speak to me about my experiences with endometriosis, but when they hear I’m actually doing well, their enthusiasm falters and then peters out entirely. It’s followed with an uncomfortable conversation or email explaining how my story isn’t quite what they’re looking for.
Endometriosis has finally made it to the headlines over the past few years — and please believe me when I say I couldn’t be more welcoming of it. In fact, I was one of the people working tirelessly behind the scenes of an endometriosis charity to make it happen. And I was lucky enough to still be there when we saw our hard work paying off, and the media starting to take notice.
Awareness of endometriosis is clearly essential. Three or so years ago no one had heard of it. I was even having to spell it for doctors while they took notes on my case. It wasn’t on any lawmaker’s agenda, and it certainly wasn’t being debated in Parliament.
Thanks to the voices of the millions of us living with this disease, endometriosis is now a topic of discussion on the radio, on TV, in newspapers, and in the House of Commons.
But there’s something missing.
Yes. The public and the leaders of our country need to know about the deep struggles of this disease. In fact, those of us with the disease need to hear those stories too — for validation and a sense of unity.
But what we also desperately need is hope. Inspiration. Motivation. Solutions. Practical steps.
How many endometriosis articles share stories of people who have found a way to manage endometriosis? How many articles have you read about people with endo who have founded nonprofits or businesses that serve our community, or help solve a problem we’re facing? I can name multiple people, but I can’t name multiple articles.
I want to pick up a magazine and learn about the researcher who’s changing the future of endometriosis in the workplace. I want to read about the twins who formulated a natural pain relief alternative. I want to read about the nutritionist who first solved her symptoms and has gone on to help others solve theirs.
Instead, I see pages and pages of articles about infertility, job loss, multiple surgeries — you know the ones. And yes, these are important and are the real-life stories of our community, but there are other stories that aren’t being heard.
There are lives being led, and we’re made to believe that lives are only being destroyed. Yet this community is one of the most resilient communities I know. This is a community of fighters, of endless strength and commitment. Please, give us some credit for the lives we’ve created despite struggling with this incredibly difficult disease.
And perhaps most importantly of all?
Give hope for the younger generations, who thanks to this new wave of media attention are (we hope) getting earlier diagnoses, only to then turn to the internet and find horror story after horror story, with the belief that drugs and endless surgeries are their only options.
I speak to multiple endo warriors who have no idea that diet can play a role in inflammation and pain, who have never been told that they can improve their hormonal symptoms with lifestyle changes, who have never been given the knowledge or education to make empowered decisions about their health, other than the limited options of surgery, drugs, and hormonal medication.
I’m not saying these don’t have a role, they do. But they don’t work for everyone, and they’re often not sustainable or affordable. We can’t be expected to spend our lives having a surgery every three years or relying on opioids to get through the day.
This isn’t a dig at doctors. It’s not a rant at the press. If anything, it’s more of a plea. Please, share our good news stories.
Spread awareness, yes, but spread hope too.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.