On “The Mighty”
Did you see this article on why content moderators fall for conspiracy theories?
Facebook employees whose job it is to review flagged posts start to believe conspiracy theories simply because they are looking at them all day long. OMG.
That’s something to think about.
Have you been putting your eyeballs on The Mighty’s Ehlers-Danlos section? Problems, griping, hopelessness, pain, misery, disability, lashing out at doctors and other health care workers, lashing out at people who aren’t sick.
If Facebook moderators succumb to conspiracy theories against their will, then simply looking at the complaining content on The Mighty might be making your chronically ill life harder.
I met Mike Porath, the founder of The Mighty at Global Genes 2018 Rare Patient Advocacy Summit, my favorite event all year that is not an ocean swim race.
Mike Porath is an impressive person. He gave this presentation about The Mighty. It was inspiring. I loved it. I was truly moved.
When I got home, I began to read The Mighty again.
I quickly stopped. I couldn’t take it. The Ehlers-Danlos feed on The Mighty is negative, pessimistic and often wrong. It is:
The horrors of having this EDS.
Descriptions of our torturous symptoms.
Posts about getting terrible medical care.
Posts about no one understanding.
Hate letters to doctors.
Hate letters to nurses.
Hate letters to Ehlers-Danlos.
Hate toward people who don’t who have Ehlers-Danlos.
Working is impossible.
Life is impossible.
Relationships ruined because of EDS.
Misinformation about Ehlers-Danlos.
Might The Mighty be making you feel:
Worse about your life.
Hopeless about EDS.
Disenfranchised.
Persecuted.
Victimized.
Trapped.
Consumed by your suffering.
Hostile towards medical professionals.
Resentful of people who aren’t disabled.
Facepalm. We have it hard enough already. Makes me think of that “friend” who turns you against other people in your life.
Don’t Let The Mighty Break You
No one needs so much reminding that EDS sucks. P.S.—the only people reading The Mighty are us. Not the doctors or strangers we wish would understand and treat us better.
Be careful how you spend your time, what you let yourself see and read. Pay attention to the impact it is having on your mood, your choices, your life.
Take care of yourself. Keep your attitude and your spirits up. You deserve hope and inspiration.
You deserve to believe doctors are on your side and friends will stick by you even if you are very ill.
You deserve to feel that the world is a safe place.
Chronic illness is a life-ruiner. Time you spend focusing on your illness should be on improving your health and getting better care for yourself. You won’t get information on how to do that on The Mighty.
Ehlers-Danlos Advocacy Organizations
It is rough being a patient with a rare, complicated, poorly-understood disease.
It’s rough being a patient with an understood, common disease.
No matter which, you have to be the expert on your illness. You have know how to demand better care and stand up for yourself.
You can do it.
How? Learn from:
The Ehlers-Danlos Society provides patient support, scientific research, advocacy, and increasing awareness for the Ehlers-Danlos syndromes, hypermobility spectrum disorder, and related medical disorders.
Hypermobility Syndromes Association is a UK based charity serving people who have Hypermobility Spectrum Disorder (HSD), joint hypermobility syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Pseudoxanthoma Elasticum, Sticklers and Osteogenesis Imperfecta.
Watch the presentations made at the Ehlers-Danlos Society Global Learning Conference. These are the doctors who care about us and understand us, who study us, who teach other doctors about us. This information will make your life better.
Blogs About Ehlers-Danlos
It sure is nice to have some understanding for the difficult life that is EDS. Personal blogs about Ehlers-Danlos are a better place to get that. I read blogs of all sorts. You can learn from someone’s story told in-depth, with pics, unlike the generalized complaining on The Toxic, I mean The Mighty. (If you would like me to include your blog on this page, email me at lessflexible at gmail dot com.)
What About The Mighty is Mighty?
The business model of The Mighty is to generate page views so they can charge advertisers mightily. Advertisers pay a lot more to be on a health-related website.
Where does the content on The Mighty come from? They get it for free, UGC from dummies like you and me.
As you’ve experienced on Facebook and Twitter, user generated content is low-quality, annoying, uninformed ranting that is addictive because it gets you all riled up. You feel like you are having a real human interaction or doing something useful, but you sure aren’t.
You’re just sitting there behind your computer wasting your precious energy with furious typing. But it is worse than doing nothing because it is making you feel worse about your life. Don’t read The Mighty. Go do one rep with a dumbbell weight instead. Strength training improves mood. I started with 1 pound weights. Use a can of soup.
The Mighty, You Can Do Better
You could have a site that does not make a mockery of your name. But it would have to be different business model.
You would have to raise your standards and choose quality over quantity. You would have to stop pandering and consider the impact you are having on patients’ lives. That would mean better content but less. Less content would cost you page views and advertising dollars. Probably not going to work.
Maybe This Post Was Not Needed
Not many people read The Mighty so maybe I didn’t need to write this. Last time I looked, only 10,000 people followed Ehlers-Danlos there. There are more EDSers in Deborah Cusack’s Facebook group, I suppose because she gives people hope. Deborah Cusack swears supplements fixed EDS for herself and her family in a few short weeks, including skeletal and neurological deformities. You can’t read about it on her website because it is so glib and vague. We have to take her word for it.
I have met a few staunch defenders of The Cusack Protocol in person, people who swear by her recommended regimen and promote it on Facebook. From what I see with my own eyeballs, they have all the severe EDS symptoms they always had. Distilled aloe may be only water, but the placebo effect is real, according to the NIH. This episode of the Psychiatry and Psychotherapy Podcast by Dr. David Puder has a fascinating, in-depth discussion of placebo effect, the need for hope and human interaction.
Don’t Let EDS Break You
Spanish psychiatrist Dr. Antonio Bulbena has studied us extensively.
In this excellent presentation on the psychiatric and psychological problems of EDS, Dr. Bulbena notes the common phenomenon of denial and projection among us.
Our strange disease with so much nervous system dysfunction ravages our psyche.
From the demands of coping with the pain and physical crashing of EDS, many of us become fierce, strategic fighters of elite caliber that you always want on your side. And many break from the strain.
Making My Life Better
There are more fun things to do on the internet for free, things that help you.
I found this cute guy, Bates Method expert Nathan Oxenfeld, from who teaches vision improvement.
Yesterday I had my eyesight checked and my astigmatism is all gone. Yay! That was fast. I wasn’t even practicing all that much. I still am very nearsighted and have been since I was 10, but I am experiencing a lot less strain. Hey, my life just got better! I want healthy eyes as much as I want healthy joints.
These vision improvement moves are so relaxing, such a nice way to start and end the day. Glad I found them. I like Nathan’s calm voice on his podcast. It’s very soothing. It gives me a feeling peace. Ahhhhhh.
Strengthen your neck so you can tolerate these eye-relaxing moves (and all of life) better.
My Favorite Internet Site
WeRateDogs.com
I send him messages:
Who are you? I love you!
I would leave Mr. Pennington for Mr. WeRateDogs. He might be the greatest poet of our time. His Twitter feed is Thoughts of Dog.
Happiness. Bliss.