If you haven't seen Jennifer Brea's TED talk and you are touched by invisible illness, it's a must-watch. Somehow, it wound up on my Facebook feed (which was a delightful diversion from all the political posts) and I clicked on it because it was recommended as a must watch for anyone with POTS. Personally, I think it's a must-watch for anyone that has ever attempted to get a diagnosis or been touched by invisible illness.
Why is Jennifer Brea's TED talk so important?
Jennifer's story is not unlike most POTS patients. She got sick and suddenly wound up with a host of symptoms that she didn't have before. The once active and vibrant student, was suddenly ill living a dramatically different life. And, while she doesn't have POTS, she has myalgic encephalomyelitis (chronic fatigue syndrome) , her story is identical to my daughters. My very active teenager started spitting up blood and in the process of chasing that diagnosis was diagnosed with POTS. Little did we know, she had Micoplasma Pneumonia and it triggered her dysautonomia.
What makes Jennifer Brea's TED talk so important, is the open dialogue around how difficult it is to get a diagnosis when it's a complicated case. It's a topic that I've written about before and I think it's an important conversation to continue to have. If a patient's symptoms appear to be diabetes or asthma, there are clear-cut tests to get a diagnosis. However, with many of these chronic illnesses, there are so many different symptoms like migraines, stomach aches, unexplained pain, dizziness and lethargy to name a few. Many patients, like my teen, have normal blood work and diagnostic tests. And so, doctors just slap a diagnosis on them when they can't figure it out.
In the case of Jennifer Brea, she was originally diagnosed with conversion disorder. My daughter was erroneously diagnosed with Amplified Pain Syndrome. Once you're diagnosed with anything that is potentially psychological or pain-related, your care changes. With our teen, we suddenly weren't getting care. We were told that every symptom she had was pain-related. Our ER visits for migraines now took a lot longer. We had to fight doctors for treatment because we disagreed with the diagnosis. When we finally did get a diagnosis of Ehlers-Danlos, we still couldn't get our children's hospital to get the other one out of the computer. It's been an endless battle and sadly, it's one will have to continue to fight.
There are so many unknowns out there. With EDS, there's no magic pill or treatment plan. There's a lot of guesswork so Jennifer is correct when she says there needs to be more research on any of these invisible illnesses that seem to target women. However, it takes millions of dollars of donations and a lot of advocacy to make that happen. Brea went searching for other patients like her and has become a powerful myalgic encephalomyelitis advocate. This week, she launched her documentary, Unrest, at the Sundance Film Festival.
My daughter too has searched for other chronically ill kids and has made contacts throughout the country. Chronic illness can be very lonely so it helps to know that you're not alone and that people actually understand what you're going through. It also helps when you find a doctor that makes you feel validated and doesn't think your illness is all in your head or just pain. Still, we have so far to go with invisible illness awareness and education. Kudos to Brea for speaking out. Too often, the chronically ill keep silent.