TED Talk: What Happens When You Have a Disease That Doctors Can't Diagnose?

Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable.

Today I am sharing a TED Talk from Jennifer Brea entitled, "What Happens When You Have A Disease That Doctors Can't Diagnose?"

So much of it rang true for me. After years of being sick and going to countless doctors, one diagnoses Brea with Hysteria. Why is it that when doctors cannot figure something out, they conclude that it must all be in a person's head? I have spent years in a cycle of getting ill and feeling physically horrible. But, by the time I can get into see a doctor, I feel well enough that the doctor either cannot comprehend the level or pain I was in or perhaps thinks I am just a weak person with a low pain threshold. Who has been through this cycle?

Who finally diagnosed me with Celiac Disease? Two people - Me and My Twin Sister. 

The symptoms have been there for years and progressively got worse. They basically went away during my pregnancies and then some time bomb exploded within me after the birth of my second child, the sudden loss of my father, the bankruptcy of my employer, and a very stressful new job.

After every single test the doctors could think of came back "normal", my doctors put me on a lovely cocktail of medications to suppress my growing symptoms and told me it was in my head. One doctor even spun her finger slowly next to her ear as she said this - the universal sign for, "You crazy!" When the medication merely changed my symptoms and and after a particularly dramatic visit to my family doctor that ended in my breaking down into ugly crying, my sister suggested, "Why not just take out gluten?"

I felt immediately better. So then I found a homeopath I trust and basically started an elimination protocol. And when I returned to my family doctors, they finally, begrudgingly conceded that it might be related to food allergies.

I am much better than I was, but I am almost constantly tired. Not to the levels Bria describes, mind you, but bad enough to feel like I am living in a world of quick sand. I also had a big flair up last week that meant 75% of my To Do List went out the window and I went back to the drawing board.

I think I need to go on an Autoimmune Protocol Paleo Diet for awhile and see if that helps. So I dove into a few books and websites and have ordered a few cookbooks. I am scared, frankly. I am not hovering in a corner crying, but I am dreading it. I have been hovering around the idea for months and have avoided it. I am going to try to find a nutritionist to help me with this, but I am going start it on my own. It could take weeks or months before I can get in to see a nutritionist.

AIP is even more restrictive which seems unimaginable to me. It cuts out all grains, dairy, soy, sugar, nuts, and the real kickers for me are chocolate, alcohol, coffee and nightshades - namely tomatoes and white potatoes. No more peanut butter. No more dark chocolate. No more baked french fries. No more tomato sauce. No more morning coffee. AAAHHH!

Do you know those old Cathy cartoons? Imagine her screaming and running into a Starbucks right now to hide from reality. That's me right now.

Image Courtesy of www.playle.com

Image Courtesy of www.playle.com

 

Do any of you feel like that right now about eating gluten free or any other change you know you need to make in your life? I share this because I one of the first steps on the path to better health is to get honest. The next step is to start paying more attention.

So, here I am saying out loud that I will start eat AIP and document how I feel.

One of the things that Jennifer Brea did in getting closer to a diagnosis is she took videos of herself on her phone when she was at her worst. She described in detail how she felt. She later played those videos for her doctor. I think that is a brilliant tool - for the doctor's understanding and also as a coping mechanism. So, that I what I am going to try. I may even share some.  

Thank you Jennifer Brea.