My Unexpected Journey to Learning Self-Advocacy

Izzy Kornblau's Story

NYC

Age: 16-24

A little bit about my journey:

My Diagnosis

Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome

Time to Get Diagnosed

It took me around 6 years of actively searching for an explanation to finally receive a diagnosis.

Year I was Diagnosed

2017 (EDS) and 2018 (POTS)

Sending Love to

Dr. Susan Polizzi

Hospital I'd Recommend

NYU Langone

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.

Let’s play 20 questions:

The song that keeps me going is:
Never Really Over - Katy Perry
I never leave home without my:
water bottle
My go-to feel better movie is: 
Clueless!!!!
If I was in the hospital, the celebrity I would most love to visit me would be:
Ariana Grande
When I need to relax, I:
Pet my cats
My favorite food is:
Roasted Seaweed
The quote that keeps me going is:
When I need a laugh, I:
Watch funny YouTube compilations
Meet my pets (or favorite stuffed animal):
Charlie (cat), Gigi (cat), Kwami (cat), Ja'mie (cat), Gurbie (dog)
My hero is:
When I’m having a down day I binge watch:
Cheer (documentary 2020)
My favorite book to get lost in is:
Harry Potter
I want to be best friends with:
Colleen Ballinger
The thing I’m most proud of:
My ability to say "red leather yellow leather" over and over again without messing up
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The most hilarious thing that has happened to me is:
I once told a funny story on my channel about needing a diaper in the hospital and the video blew up all over diaper fetish websites...it wasn't ideal to say the least, but it was SO funny.
It really means a lot when someone does this:
When a friend I'm with asks me if I need a chair when I'm out or if I need a break.
My favorite social media account to follow is:
SubwayCreatures
The advice I would give to myself back at the beginning of this journey would be:
Go online (YouTube and Instagram) and find some friends who also are dealing with daily chronic pain and stomach issues!!! Even if you don't have a diagnosis, finding someone with similar symptoms feels amazing.
Words of encouragement that I’d give to my fellow warriors are
Follow my journey: https://www.youtube.com/channel/UC0-lNmAdKsYu3EZAwgqg5ow/videos

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