“Wow, I feel like my condition has stabilized a bit. Finally, I can take part in regular life again!” I thought a few weeks ago. Life has been challenging throughout 2020. Actually, challenging isn’t even the right word. It has been a major disaster. When the pandemic started, a lot of past trauma that I… Continue Reading Chronic Illness, the bad days & coping
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Ehlers-Dan… What? Most people – and sometimes even medical professionals – do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness. I feel like this can only be changed by actively and publicly talking about EDS as… Continue Reading Raising awareness for EDS: I was a guest in several podcasts and blogs!
It is not easy to live with a chronic condition. All of a sudden, your whole life changes, and nothing is like it used to be. You fall into a big hole that does not seem to have a bottom, and it is challenging to get out of it again. However, with time, you learn… Continue Reading Learning to accept life with a chronic illness.
I recently had the pleasure of interviewing actress and advocate Jameela Jamil for ABILITY Magazine. Jameela Jamil is an advocate for social justice, body neutrality, LGBTQ rights, and for a while now, she has also been using her public platforms to speak out about her life with Ehlers-Danlos syndrome and many comorbid conditions. In our interview,… Continue Reading Interview with The Good Place actress Jameela Jamil
Because with EDS, every bone is a funny bone. John, the CEO of EDS Awareness and a dear friend of mine, asked me to send out this new newsletter once a month. It will include useful information about all things EDS: resources, important events, articles and more. I plan to make this a place for every one… Continue Reading New Newsletter: The Funny Bone News!
Only two years ago, I would have never considered therapy. Well, I guess life changes, and even my stubborn self can change her mind. Up until today, I have a bit of a love-hate relationship with therapy, but I feel it changed my life for the better, and I don’t only see my therapist when… Continue Reading Why I have changed my opinion about therapy as a chronically ill person
This is a letter I wrote to myself right after getting diagnosed with EDS in 2014. It’s all the things I would have needed to hear from doctors, friends and family. And it’s also advice I gave myself. It was published by The Mighty in 2016. Maybe this text can help you if you are… Continue Reading A letter to myself after getting diagnosed with EDS in 2014
Over the last weeks, I got many kind messages from followers of my blog, often saying, “The way you handle your life with all your conditions is so inspiring. How do you do this?” Let me try to give you an unfiltered insight into my life during 2020 and until now. So how do I… Continue Reading Let’s get real. This is how 2020 really was for me.
Ah, what’s there to say about my first feature-length film, We Are Visible? It’s probably the most important project I ever took on, and I poured all my heart and energy into it. Let’s start from the beginning. We Are Visible is a 69-minute documentary about people living with Ehlers-Danlos syndrome. It features six families… Continue Reading We Are Visible – The first feature-length Ehlers-Danlos syndrome documentary