We See You – You Are Not Alone
Two steps forward, one step back.
A contribution by Lyn Luca Berlin
Day in, day out. One day feels good, the next it goes downhill again. Doctors show understanding, and sometimes the feeling of not being seen remains anyway. The feeling that an illness or one's own identity has to be explained and defended, or is even overlooked. That medical care, which should be a matter of course, suddenly becomes a hurdle.
“Why don't my doctors know enough about this disease? Is anyone even researching it internationally right now?”, asks a patient with sleep apnoea. “Why is my menstrual cycle different from other people's?”, wonders a non-binary person.
“Why don't doctors take me seriously when I tell them I have endometriosis?”, asks a young woman with endometriosis. “I have pain in my heart, left arm and lower back – but is that typical for a heart attack, or which symptoms should I go by?”, wonders a trans man.
“Will this blood pressure medication really be able to help me if it was almost exclusively tested on men?”, thinks an older woman after being diagnosed with high blood pressure.
And the question remains: is anything really changing? Many people are not alone with this feeling. We are not always aware of how many people have similar experiences – regardless of which illness they have or who exactly they are as a person. That is not what matters. What matters much more is: these experiences and feelings connect us.
Sometimes “I understand you” is still not enough. Questions remain open. Many questions. Why does my body tick differently from how it should? Is what my body is doing normal, or perhaps unusual? How can I know what is right and what is wrong? Queer people in particular encounter heteronormative expectations, ideals and a binary system in the media that tells them: “You are different and don't fit in here.”
This binary system has long been contested and shows many gaps. Over the decades, it has become ever clearer how little research there is not only on female bodies but also on queer people and their health needs. This is exactly where we want to start and, like many others in this world, help shed light on the matter. Even if progress seems slow, it is worth making a scientifically grounded contribution and staying committed.
GenDiMedNet is already moving a lot. We research, network and work to not only reduce the medical gender gap but also make it visible in the media. Many people have already heard of this knowledge gap and are regularly informed about it, but the relevance of this knowledge gap is not yet clear to everyone. This is what we want to build on. Here, current contributions for communities will be published regularly in future, and a space will be created in particular for content from communities. Experiences, questions, perspectives and topics that might otherwise find no place. Communities that connect people through their illness, and communities that make people and their sexual orientation as well as gender identity visible. Because our society is made up of numerous communities that fight together for their rights and draw attention to their hurdles and problems.
Change does not happen overnight. Sometimes progress means one step forward and two steps back. But every step can help turn a knowledge gap into knowledge in the end. Uncertainty into orientation. And the feeling of being alone into togetherness. For a committed togetherness instead of against each other.