Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
There’s no need to embellish chronic fatigue syndrome (ME/CFS; ME) stories. Shakespearean in their depth, ME/CFS stories can be so disturbing that some people will undoubtedly look for ways to dismiss them. Healthy, active, successful people, after all, don’t suddenly end up in bed for decades for reasons doctors can’t explain. At least not in most people’s reality.
That’s why telling our stories in a calm, matter of fact but forceful manner is best. Adding a touch of humor is really good. Talking to the audience like they’re in your living room – is even better. Including their concerns in your story – now, you’re really talking. Jen Brea does it all in her outrageously successful TED talk on chronic fatigue syndrome.
By itself her story is powerful and moving. The shocking collapse of the young, active PhD student: healthy one day, disabled the next. The seemingly ordinary infection, the exhaustion, the strange neurological symptoms, the years in bed, the innumerable lab tests, the fruitless doctor visits, the conversion disorder diagnosis (by a neurologist not a psychiatrist), the terrible relapse after exercise, the lack of help from the medical profession. Jen’s nightmarish story with her always evocative visuals (including a moving one of Whitney Dafoe in pain) will undoubtedly wake up many.
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For those who missed the boat the first time around, Jen’s masterful punch line – that what happened to me could happen to you, and not just if you have ME/CFS – should capture them. Her assertion that being a woman means being in danger of having an illness downplayed or turned into hysteria or anxiety will resonate. The idea that what’s happened to ME/CFS is part of a broad historical trend that any woman could be touched by someday is a powerful one that could help enroll many.
While she didn’t mention them, other primarily woman’s disorders such as fibromyalgia, IBS, migraine, interstitial cystitis, vulvodynia and ME/CFS that affect millions have been virtually ignored by the NIH. The pattern is clear; if you have an “invisible illness”, most of which happen to women, you’re in real trouble.
After seeing the tremendous increase in immune disorders over the past couple of decades – which, again, has mostly fallen on women – one has to ask why, as Jen put it, women’s immune systems aren’t as much a battleground for equality as other issues. Why organizations like the National Organization for Women (NOW) have never taken on the conversation in the medical profession that allows it to sideline diseases affecting millions of women year after year after year.
Being a great communicator is just one part of making a difference. There’s also the art of getting the message out. Few are good at both. Jen is obviously good at both. She’s the first person with M.E. that I can remember who’s been able to get to the TED stage.
As a blogger who watches internet traffic pretty closely I can tell you that getting 160,000 views in three days is unimaginable. For an illness which counts its internet traffic in the tens of thousands – reaching 160,000 people, most of whom probably know little about it – is beyond believable.
Jen undoubtedly would have been successful whatever she ended up doing, but I doubt she would have made the difference she has now.
If you haven’t seen Jen’s 17 minute TED talk, please consider passing it on to everyone you know.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.