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

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...

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.

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.

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.

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

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.

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.

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.

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

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.

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.

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.

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.

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...

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.

Today doctors label everything as stress :(

In nine months I went from teaching Latin ballroom to shopping for a wheelchair..... from following my biggest dreams to chasing pain relief. I'm with you and I think you may be one of the most beautiful souls. You gave me much to think about.... this time positive things❤️

What this lecture should be called is "what happens when you have an illness that is incompatible with most doctors belief systems and egos." Doctors think they fully understand the human body and that their tests can measure everything. In short their intellectual hubris is enormous. Until doctors develop a sense of humility they will fail to comprehend illnesses like CFS. It's sad that they put their egos above the well being of their patients. They might also consider spending more time actually listening to their patients.

I am going through this right now post covid, for about 5 months - I just found out ME/CFS couple days ago. I couldn't believe how could that energetic me became like this...I can't talk more than 10 mins with severely worsened symptoms, I need to take breaks while eating.. I don't know anybody without this disease could ever imaging it. I hope one day I could be one day talk this much, remember this much, and function even just half of the old me.

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