In my blog, I’ll share with you my experiences as a chronically ill and invisibly disabled advocate and journalist.

Karina, a woman with short brown hair leans against a wall on a balcony during sunset. She wears a white hoodie and holds a glass of wine in her hand. In the background you can see an old church and many older houses.

Cheers, to a new New Year’s Eve tradition: Gratitude

Can you believe that the year is almost over? Again? I feel like since the pandemic started, time has flown but also stood still at the same time. Unlike 2020 - we can all agree that 2020 should just be canceled entirely, right? - I have mixed…
Karina, a woman with short brown hair and a white shirt. She wears large silver hoop earrings and a white dolphin necklace.

Not losing yourself as a chronically ill person

My back hurts, sitting in an uncomfortable grey metal chair with red and white tape next to me, so nobody can sit down right beside me. I stare at the white wall that features a giraffe and a leopard - at least I think it’s a leopard, but…
A colorful butterfly and the words let's talk about coping with EDS

Chronic Illness, the bad days & coping

“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…
Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick.
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Guest blog posts and podcast interviews

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.…
A woman with short brown hair sits on a white carousel horse and smiles.

Learning to accept life with a chronic illness

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,…
A black and white shot of Jameela, a woman with long black hair who rests her head on her hand
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Interview with The Good Place actress Jameela Jamil

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…
Karina, a woman with shaved head, is standing in her backyard wearing a black hat, red lip stick and large silver hoop earrings

New Newsletter: The Chronic Pain Partners Post

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…

Why I have changed my opinion about therapy as a chronically ill person

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…
Karina wears a red The Mighty Shirt and a blue flower in her short, brown hair. She is smiling.

A letter to myself after getting diagnosed with EDS in 2014

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…
Black and white photo of Karina, a woman with 7 mm shaved hair and huge round earrings.

Let’s get real. This is how 2020 really was for me.

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…
Karina, a woman with super short brown hair is wearing a black hat and has her hand on top of the hat to take it off. She wears huge, feather-like earrings and lipstick.

How it all began: Getting diagnosed with Ehlers-Danlos syndrome

Oh Gosh, I feel like I have told this story too many times, but you are new here, so I might as well share it again. So this is how it all began and the reason why you are here, on my Blog, today. I try to keep it short, though.  Am…
Black and white photo of Jade, a young girl with shoulder-long, blonde hair and a tube up her nose. She faces towards her left hand in which she holds part of her IV
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Watch ‘We Are Visible’ online ON DEMAND

My documentary film ‘We Are Visible,’ featuring people living with Ehlers-Danlos syndrome all across the globe, is now available ON DEMAND. Unfortunately, due to COVID-19, most events and film screenings for ‘We Are Visible’…