What are “#Alternative Facts?”
“Over the weekend [following the inauguration], President Donald Trump’s counselor Kellyanne Conway coined the term “alternative facts” to describe the inaccurate information about Trump’s inaugural crowd that Press Secretary Sean Spicer shared in his first press conference (OregonLive.com).
“Alternative facts are not facts. They are falsehoods.” (wiki)
#ChronicIllnessAlternativeFacts are what I’m calling the judgments and misperceptions placed on people with chronic illness, such as being told they are “weak” or “lazy.” Or when someone accuses a person of taking up a parking spot for people with disability when they have an invisible chronic illness such as MS or fibromyalgia or rheumatoid disease or ME/CFS.
Being Told it’s Nothing
- I posted the above image in The Bonding Effect blog post #3 looking at epigenetics and causes of chronic illness
I had upper back pain as a child. I was taken seriously by all the lay healers, chiropractors and body workers my mother took me to over the years. Even though nothing they did actually ever helped, I was believed. It made a huge difference.
When I asked a medical doctor about it once as a young teen and he saw nothing when he looked at my back for 30 seconds (I’d gone in for something else and asked this question as he was getting ready to walk out the door, to be fair), he told me it was nothing.
That tiny incident amid all the positive experiences made me want to become a health care professional in an alternative field despite the strong pull I had to go into medicine. I went to an unusual experience-based medical school instead.
I have since rarely been accused of any of the misperceptions so commonly experienced by my fellow chronic illness journeyers. It’s in large part because I lost trust in the medical profession and stayed away from doctor’s offices almost entirely after developing ME/CFS. My strategy was avoidance. Not everyone has that luxury.
- I posted the above image in a blog post about mind body medicine, which contributes to the belief that it’s all in our heads
Hearing about the judgment and misperceptions people experience every day sometimes makes me so angry I feel steam coming out my ears. It often fuels my dream of redesigning medical school curricula and providing a better education to our baby docs (I’ve created an outline for a semester’s worth of classes in a few hours with all the research I’ve been finding).
While waiting for the energy and right timing (?), it just makes me want to write like mad. Nonstop if I could. And get the information and the science out there to everyone who has ever been labelled as hysterical, told they were weak, shamed for playing the victim, condescended to, or disbelieved. Or being told they have a conversion disorder and that, while this psychological issue is “real, your physical symptoms are not biological.” This was Jen Brea’s experience when trying to get a diagnosis in the early years of her ME/CFS.
I have been inspired by last weekend’s developments that lead to the new meme #AlternativeFacts.
Images of how I might mock the blaming and shaming statements keep coming to mind. Some seem funny to me at 3 in the morning when I wake up and my creative juices get going. They aren’t always so humorous in the light of day, but that’s okay.
I started this page as a place to share the terms and accusations from a place that comes with a little humor. As a way to be irreverent about it instead of felled. As a means of acting out rather than having to bear it and hold it all in by ourselves. As a tool to feel the satisfaction that comes from standing in a place where we KNOW we are telling the truth.
Because we live it every day.
- I posted the above image in The Bonding Effect after summarizing the research linking epigenetics to bonding and separation in blog post #3 about causes of chronic illness
#ChronicIllnessAlternativeFacts Highlight Truth
#ChronicIllnessAlternativeFacts highlight truth and falsehood.
They share the facts that support our experience and what we know. Make inaccurate statements, false beliefs and real facts more visible. Sometimes they include the research too.
I’ll be posting images to this page as I come up with and create them and updating the format as I figure things out. I’ve just discovered a free new tool for making gorgeous images – or so I think of them anyway! – and it’s my new toy.
I’m testing out whether it’s possible for you to post images, art, pics etc in the comments, which I’ll be setting up shortly (I’m not sure why they aren’t showing up on this page at the time of this posting but am looking into it!).
You can comment and share pics on my FB page.
What are your #ChronicIllnessAlternativeFacts?
What kind of attitudes, words, and comparisons have been thrown your way? Or what’s the
worst best one you’ve ever heard? Or that makes your head spin? Or inspires you to want to change the world? Do you have a story?
You are not alone.