Discover and read the best of Twitter Threads about #dysautonomia

Most recents (6)

Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
Adding thread about vascular and nerve entrapment
Thread: Thank you @violetbakes for the pictures backing up the next installment of what I think would be useful to #EDS patients. Something that could be used if going to the hospital
Thread: thank you @ABMollyblum for the next installment of my pinned thread of things I’ve found useful in managing #EDS #EhlersDanlos in my wife and daughter. Info for Gastroenterologists for your GI appt. alanspanosmd.com/wp-content/upl…
Read 11 tweets
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
Something that really sucks about having an invisible disability or illness is people automatically expect you to be able to everything an able-bodied person can. And then they’re surprised when you can’t...

(This is gonna be a thread, by the way...)
And when they (inevitably) say, “But you don’t look ill/disabled/etc” it feels like they’re questioning the validity of our illnesses and disabilities, like they don’t believe us because they can’t see how someone could have an invisible condition.
I have a loose spine due to Ehlers-Danlos Syndrome. I can’t lift medium or heavy items.
One time, I was in a supermarket, about to pay. I had items in a wheelie basket, and the lady at the checkout told me to lift the basket onto her counter.
Read 21 tweets
In case you are also chronically ill and planning for potential power outages or heat waves, here are some things I do or am considering doing for copes

Hopefully this will help someone else
It sounds weird but this dog pad is pressure activated cooling power. It requires no electricity and is reusable. (You can also make it RLY cold in the freezer.)

There are big dog sizes that work for my entire body

m.bedbathandbeyond.com/m/product/chil…
Consider filling a bathtub or bucket/tub with cool water. Dip your feet or entire body in to lower your body temperature.
Read 28 tweets

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