What happens when you have a disease doctors can't diagnose | Jennifer Brea

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. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.

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[arreola]

I just wish Drs' wouldn't say, "there's nothing wrong with you". They should instead say, There's obviously something wrong. I just don't know what it is...

[abcxyz]

Reminder to anyone watching this who doesn't have this disease: not everyone with ME/CFS is going to be or look as severe as Jennifer Brea in her recorded footage. A lot of us are able to push ourselves to pretend to feel well around people, and then afterwards we crash for hours/days/weeks. If you see someone with ME/CFS looking well and walking around, that doesn't mean they're not ill. It means they're either hiding it or using an adrenaline rush to push. They also may have had to lie in the dark for hours or days to prepare before the activity you see them engaging in. And you have no idea how hard they may suffer afterwards when no one is around. Generally, when we're not pushing, we're crashing. Never make assumptions about someone's illness experience; instead, ask and listen and trust what they say. Unless they're a known pathological liar, there is no reason not to believe them. But also know that even when asked, we may downplay our experience as not to scare you or draw too much attention.

[kandigirl]

I have fibromyalgia, and when she had to stop, and said her brain isn't what it used to be, I cried with her! The biggest struggle with chronic illness is not being able to be the person you used to be. Most of us were active, vibrant people.

[meganhenry]

I'm going through this now and it is the most lonely place to be. "You're too young." "You look good." "You look healthy." I'm not a depressed person, but now I am.

[vanessa]

It's been over 2 1/2 years so far for me. I can accept my disabilities but not being believed is by far the worst part.

[raggedblossom]

I live with this disease and know exactly how much this public talk would have cost Jennifer in the following days. All the more appreciation to her for making the effort.

[PCalyssa]

I can clearly remember a pediatrician saying to my mom "She's kind of a hypochondriac". That has stuck with me my entire life and I have always convinced myself that I was overreacting and would have so much anxiety about telling doctors about any symptoms I was having. Last year I went to my doctor because I had been feeling terrible for weeks and walked out with a diagnosis of acid reflux. I thought "I must be so over dramatic if I'm feeling so terrible about acid reflux." A few days later I was in the ER in diabetic ketoacidosis and found out I have Type 1 Diabetes. Believing people when they say that they do not feel okay is so important. Thank you for shedding light on this.

[prairiemomof]

I also have this condition. I can only hope that, now that lots of COVID long-haulers are having ME symptoms, we will begin to get the attention and help that we have deserved, all along.

[heversantos]

The really sad part is that no body cares until it happens to you or a loved one. Shows how human nature is

[jollicrafts]

I was diagnosed with ME/CFS last year, although my symptoms began after I had viral meningitis twenty years ago. In the U.K., the only "treatment" is cognitive behavioural therapy (feeding into the established idea that the illness is psychiatric in nature) and graded exercise, which actually worsened my symptoms. I was a journalist before I became ill. Now I often can't find words as my brain doesn't work the same way. I am a single parent bringing up a four year old...I survive by going to bed the minute he does and while he is at preschool. I have no life beyond that and have been denied disability benefits on the grounds that if I can look after a child, I don't need help. I often feel like I can't go on, but somehow I do. It helps to know I'm not alone.

[kvonb]

I was diagnosed over a year ago - my diagnosis was said so flippantly and matter of fact, after years of symptoms and being told it was in my head - 'you have fibromyalgia and M.E, heres a leaflet and i suggest the support groups' That was it... That was how my life changing diagnosis was given to me. I cried watching this. Bless all who have 'invisible' illnesses.

[maidmarion]

My daughter had ME for years. She could not even hold her head up. She was so ill. Her doctor was sympathetic and sent her to a research facility to discuss how she could improve her condition. The Consultant there told her she should ‘get a flat and boyfriend and be naughty’. My daughter was attractive and he made her cry and proceeded to comfort her. It was so good that I was there with her. Years later the patronising sexist attitude shocks and angers me. My daughter was an extremely clever law student who became ill. She was hoping for some kind of help but instead support she was subjected to abuse. Let’s hope things have changed.

[samtom]

Good on you Jennifer Brea! Before this video I didn't even know that ME existed and I believe that now you have shed the light on this crippling disease.

[felixthecrazy]

Remission. That word people think means "all better, " but actually means "I'm just not dying as fast as I was. "

[MrDombaj]

Today doctors label everything as stress :(

[infinitemuze]

I am one of the Missing -- living with ME for the past 30 years. Thank you for exposing this devastating illness. <3

[pookamonsta]

This brought tears to my eyes. this has been my life for the past 6 years. Im only 25 years old. I live life like im 70 years old. Everyone treats you like its all imaginary, even my dad who is a doctor and knows all about fibromyalgia and cfs.

[bravado]

If you have had or going through CFS, you will know how hard it would of been to even get up on stage. This woman is breaking down walls for the greater good. Much love...

[alexandriamitchell]

“My brain is not what it use to be...” I feel that so much. 10 years of chronic pain for me I feel so much for everyone in the comments ❤️

[bertadiaz]

There are some beautiful news: her M.E is in remission now! She posted it on twitter