Posts
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.…
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…
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…
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…
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…
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…
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…
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…
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…
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…
In conversation with Ian Harding: actor, author, activist
In my role as journalist for ABILITY Magazine and as advocate for the Ehlers-Danlos community, the German organization Chronisch Cool contacted me and connected me to Ian Harding, better known as Ezra Fitz in Pretty Little Liars. Ian is…