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My Unexpected Journey to Learning Self-Advocacy

3 Fun Facts

My favorite food is:

Roasted Seaweed

If I was in the hospital, the celebrity I would most love to visit me would be:

Ariana Grande

The song that keeps me going is:

Never Really Over - Katy Perry

This is my story:

Hi! My name is Izzy Kornblau, I’m 23, and I have Ehlers-Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and a few other common comorbidities. I experience chronic pain, subluxations/dislocations, dizziness, and abdominal pain, among many other symptoms.

Growing up, people used to tell me I was “falling apart.” I seemed to always have a new minor injury lasting a few weeks or a new unexplained health symptom, like pain with eating or pain with speaking and singing. Seeing 40+ doctors between the ages of 12 and 20 to diagnose and treat my unexplained symptoms was difficult, but constantly hearing “I don’t know what’s wrong” was worse.

It felt like I was doing everything right: I’d have a list of questions and concerns to address in the appointment, I’d come with doctor’s notes and blood-work, and I’d ask the doctor for help. Yet, each time I felt like I’d leave with nothing other than a loss of money and time. I started advocating for myself and doing my own research as a result of these disappointing doctors appointments. I learned that I had to know better what I wanted from appointments, how to ask for it, and how to ask again when I was rebuffed.

As I started to learn that I did have a chronic illness and that it was okay to use that language in reference to myself, I felt validated in my needs and thus more readily asked for what I needed to meet those needs – inside doctors’ offices and beyond. Rather than skip a social event because of fear that I would have to walk for too long, I started actively researching routes and telling my friends in advance that I would likely need breaks during our trip. I learned how to assert my needs as well as how to share my experiences with others in ways that would invite conversations rather than guilt someone for a presumption they made about me, for example.

Learning self-advocacy has been central to my health journey, and in May 2018 I started a YouTube channel to share my experiences with chronic illness, discuss self-advocacy in healthcare settings, and educate about EDS, POTS, and other common comorbidities. Through my channel, I break stigmas surrounding chronic illness and disability. Over the last year and a half, I’ve shared WAY more about my life than most would dare to on social media: my daily chronic pain struggles, embarrassing medical experiences, and the heartbreak of losing my best friend in 2019 due to chronic illness. I’ve also shared so many of the positive aspects of my life despite my chronic health difficulties to make others feel less alone and hopefully more optimistic.

I recently graduated from Washington University in St. Louis, and I plan to pursue a master’s in genetic counseling. I’m excited to use this degree to further help people with unexplained symptoms, POTS, and EDS, and also expand my expertise and advocacy to include even more chronic illnesses and disabilities.

Izzy Kornblau's Story

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