How you can find meaning in suffering
Endometriosis is a disease that significantly reduces the quality of life. It affects all aspects of one’s life, limiting or making it impossible to have a social life, a sexual life, to work and to have a family. Some find relief in alternative therapies, others manage to get excision surgery that improves their lives. Unfortunately, not all find relief with surgery, even if it was performed by a specialist. Sometimes additional therapies and treatments are needed to fix all the other comorbidities associated with endometriosis.
Most people affected by endometriosis also suffer from depression and anxiety. These mental health issues require a lot of work. Some find the disease overwhelming and pointless, but others manage to find meaning, or better said, they manage to give meaning. Endometriosis is, for most, a lifelong disease and even if they manage to get relief with surgery, those who have it will always consider themselves part of the community and they will not stop fighting for theirs and others right to treatment, for awareness and against misinformation.
We have known quite a lot of brave endometriosis warriors ( all endometriosis warriors are brave) who’s life was changed for the better after surgery, not just because their symptoms improved, and in some cases disappeared, but because they made it their purpose to inform and help others.
Barbara and Nina, two former patients from Slovenia, decided to start their own endometriosis association. But how does that work? And can anyone do it? What’s the role of an endometriosis association, how does it help people and how hard is it to start one? Barbara and Nina were happy to tell us and everyone about their project, hoping that they would inspire others to fight and redefine their lives for the better, despite the disease that has redefined their lives for the worst.
Their association is called Yellow Educational Institute (in Slovenian: Rumena izobraževalnica).
“Its main objective is to educate, raise awareness and offer support to persons with endometriosis and adenomyosis. Our goal is to spread knowledge about the mentioned diseases, to give support to every patient that needs it and to also give support to their family members and friends. We know how hard beginnings can be – you get a diagnosis and you do not even know where to start. When we were in that position, we wanted to find every piece of information there is. We were not exactly successful because you cannot find a lot of information in our language; there is a lot of misinformation and myths, especially myths. When we discovered a Facebook group called Nancy’s Nook Endometriosis Education and their website, we knew that we wanted to do something similar in Slovene. We found a treasury of knowledge.”Barbara & Nina
Barbara and Nina provide educational materials for people who want to know more about the disease. They translate the materials into their native language and also try to explain them, to make them more accessible. They notice that women with endometriosis have a great desire to learn, to understand what’s happening to them and that they are willing to fight. One of the goals of the association is to enable communication and self-advocacy.
Such an initiative is not easy, Barbara says. “You need to have a clear vision about your goal, many ideas that effectively raise awareness, you need a lot of material and correct information for your social network’s posts, you need time to create a useful website and, ideally, a group of trustworthy and hard-working people. When you start an organization, there is a lot of bureaucracy too – everything has to be legal. Time is always the main problem, because you have your personal life, your career and other ‘’must-to-do’’ tasks; an association is not necessarily your job, in a majority of cases it is a voluntary project. We think that is the beauty of it – you REALLY want to help other people with the same diagnosis! “.
Our two former patients are just two examples of people who are trying to change the world and help the endometriosis community. They know what needs to be done and how to do it. “According to the existing information that circulates in the media, we think that we always need to strive for their quality and not quantity. We are currently in a situation where quantity is causing more harm than good. It seems impossible to conquer this vicious circle, but because of our and your work we can see changes in the endometriosis and adenomyosis community. We should keep in mind that the receiving of information is a lot better, if we provide it in a simpler language with the focus on the essence. This requires us a lot of time dedicated to reading, learning and searching for the correct information in the medical literature. All of that is an investment in our knowledge – there is never enough of it!”
We congratulate them and offer our continuous support with educational resources.