Posts

A woman with long brown hair bound to a ponytail sits in her garden on a chair with giraffe pattern. She smiles, wears a black shirt and sunglasses on top of her head.

Interview with EDS advocate Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children

For our Chronic Pain Partners Post newsletter, I spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares…
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#AbleismusTötet: Violence against people with disabilities

What is #AbleismusTötet? #AbleismusTötet is a project initiated by the German disability rights organization AbilityWatch e. V. to uncover all cases of violence against people with disabilities in German care homes. In April 2021, four…
A comic-like illustration of a Zebra with a golden microphone in front and text: EDS & Aging, New Project

EDS & Aging

The EDS & Aging Project Funny Bone Newsletter - March 2022 presented by EDS Awareness This is a community-centered project with people older than 45 who want to share their experiences about aging as a person with EDS.…
A woman with shoulder-long blonde hair sits on a blue exercise mat. She wears black pants and a black tank top and lifts her left arm up to her side. Text: The Zebra Club.

Jeannie Di Bon’s Zebra Club App – A Review

“Wow,” was the first word that came to my mind when I started to exercise with Jeannie Di Bon’s new program: The Zebra Club. My feelings regarding Jeannie’s new app were very similar to when I read Diana Jovin’s book Disjointed, which…
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Speeches & Interviews

Speech at my film screening @ Chapman University https://vimeo.com/385576868 Interviews Podcast with Linda Bluestein and EDS Awareness https://www.chronicpainpartners.com/webinar/we-are-visible-podcast/ Volunteer…
Three red gift boxes. Text: Gift Ideas

Gift ideas for chronically ill people

The holidays are around the corner, and soon, we all will be ordering presents for our healthy or chronically ill friends and family. I don’t know how you feel about this, but I always have a hard time finding the right gift. Luckily, there…
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…
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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…
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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,…

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…