An Open Letter to Senator Kamala Harris
When Ten% of Female Constituents Are Silenced
Nov 5, 2017
As a California native and women’s health advocate, my vote is my voice. I’ve voted Democrat since I can remember, immensely proud to be a part of a party that prioritizes equal rights.
But mine aren’t equal. And it’s not equal for at least 1in10 females, regardless of race, religion or orientation.
I have a pre-existing condition called endometriosis.
Endometriosis is a body-wide disease of inflammation, mutating like cancer, flaring without warning of intensity or duration. The pain is worse than childbirth or a heart attack, depending on its location, and is historically dismissed by medical experts as hysteria.
After the immense struggle to fight the “hysteria” diagnosis, the next step perpetuates medical myths around palliative and castration bandaids, both proven inappropriate, ineffective and with irreversible damage.
There is no cure. It is hell on earth and a never-ending battle to be a part of the women’s health conversation. Which we still are not.
I have first-hand knowledge of this abuse. Being gaslit by the medical community for more than half my life, and due to this negligence, my fertility, career, and a significant amount of my hard-earned finances stolen and replaced with medical debt. The healthcare I need for a disease first recognized during Socrates, isn’t covered by my insurance, recognized by the medical community or validated by our elected officials.
The only time I’ve seen endometriosis addressed in a political format was when ‘13 Men’ listed it as an area to cut in healthcare reform. Cut?!
Now equipped with years of research, I was ready to affect change. I reached out to you, my Senator. The Senator I voted for, follow, like, retweet, participate.
Here’s what happened:
I sent two letters, both received standard responses.
I tweeted daily for months.
I sent emails to your staff requesting a meeting, while I was bounced around from one contact to another. For months.
I finally voiced my frustration via email about a lack of response and I received a call. Elated, I continued to share all my data: research from www.endostats.com, the documentary www.endowhat.com, my media kit www.UniteEndo.org, a petition to the American Congress of Obstetricians and Gynecologists (http://www.caseyberna.com/blog/2017/7/31/petition-to-acog-to-improve-standards-of-care-for-endometriosis-patients), and our recent work with the World Health Organization and Non-Communicable Disease Alliance, where I was commended for my commitment to amplify critical information to more than 25k in a patient-driven awareness campaign, while bedridden.
I was told by your office that endometriosis would be put on the agenda, discussed, and I’d be hearing back soon. I waited anxiously, hopeful, optimistic, determined to believe that if I went through the proper channels with evidence and documentation, that I would be heard by your office, you. My champion. Surely you would be outraged if you only knew of this social injustice.
Silence.
Finally I resorted to daily follow-up calls.
Still silence.
Your platform is championing equal rights, women’s health and single-payer.
But I, along with my 176 million endosisters continue to live on the fringe of society because no matter what we do, we’re still silenced.
I invited your office to an awareness event. Surely someone on your team could spare some time to acknowledge a disease that ruins lives. To publicly stand in support of 1in10 females.
Still silence.
After months and months of constant outreach I am speaking out with this Open Letter to stop the silence and save fertility, ability and dignity.
Senator, my goal was also the White House. Specifically, the communications team. Even after the education, deliberate career choices, and fighting for other’s social injustice, my dream died.
It died because I wasn’t heard by those that took an oath to serve and heal, but didn’t. My contribution to society died and I became invisible.
I won’t be silenced or invisible any longer.
I’m seeking to vote for the person or party that is willing to stand up for me. I want to vote for the politician that finally takes a stand against this systemic abuse. Is that you?
Senator Kamala Harris, I hope you’re listening.
Dear God, I hope someone is listening.
Please hear us. 176 million. The invisible ten%.
#endometriosis #socialinjustice
