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Brianne Benness Profile picture
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19 Dec, 4 tweets, 2 min read
I continue to fucking hate living through a time when people with post-viral illness must simultaneously run awareness campaigns about how terrible their lives are (in the name of prevention) while simultaneously assuring people with new post-viral illness that it gets better.
(ps if you’re one of those newly sick people still trying to get your bearings, I wrote you this letter. and lots and lots of people agreed to record themselves reading it, so you can watch or read. 💗)

noendinsight.co/dear-problem-p…
(spoilers from the letter:) “Maybe you are angry that the people you counted on have s
(in this thread I say that I didn’t have LC and I’m actually not sure if that’s true, based on ✨timing✨, but that doesn’t really impact any takeaways here.)

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Brianne Benness Profile picture
18 Oct
ok one more thing: whenever I am silly enough to wade into alt med discourse, it is so clear to me that we do not have a common definition for what qualifies as "alternative" other than that a lot of people use the term to discredit people who are already struggling.
is acupuncture "alternative" now it's covered by some insurance? are elimination diets "alternative" if they're never covered? are vitamins & supplements "alternative" if they've been extensively studied?

who benefits by casting something as "alternative"? "alternative" to what?
anyway I hate exploitative opportunistic quacks as much as the next chronically ill person, but you'll find them wherever there are desperate people. lots of them are selling snake oil and also lots of them are overprescribing otherwise effective drugs to every desperate patient.
Read 5 tweets
Brianne Benness Profile picture
18 Oct
hi if you feel like it's more important to blanket condemn everything under the umbrella of "alternative medicine" than it is for people with un/under-treated illness to find whatever tools will help them get through the day, please just go ahead and unfollow me now.
for a lot of people the alternative to "alternative medicine" is literally nothing.

also, a lot of "alternative medicine" is well studied.

yes there is a lot of misinfo out there. there is also a lot of abuse & neglect within the system.

get on board w harm reduction or gtfo.
“alternative medicine is dangerous, you should trust your doctor!”

1. my doctor recommends safe home remedies as first line interventions all the time.

2. a lot of doctors literally refuse to diagnose hEDS/HSD specifically *because* they have no treatments to offer. so.
Read 5 tweets
Brianne Benness Profile picture
18 Oct
ok this is actually something I see kind of frequently:

sick person 1: I am very sick so I rely on alternative medicine because medicine/pharma has nothing for me.

sick person 2 [defensive]: I rely on med/pharma to stay functional or I would be bedbound!

sp1: I am bedbound?
it's such a weird dynamic and it's so common?

stop assuming that very sick people who are skeptical of medicine are turning to alternative options because they just haven't been that sick yet?
same vibes, tbh
Read 8 tweets
Brianne Benness Profile picture
18 Oct
I'm actually not sure if modern medicine deserves any credit for keeping me alive? I have had a lot of encounters with medicine but they have almost universally been unhelpful.

maybe antibiotics, I suppose, but no specific scary infection.

(re: a question tweet floating around)
over the last five years, my spouse deserves most of the credit for keeping me alive while my doctors deserve no credit at all.

cursed alchemy of survival?
I was sick a lot as a kid, just not with anything treatable (though some are vaccine preventable but I got infected too early or too young).

(aka measles, mumps, mono, multiple cases of chicken pox)
Read 5 tweets
Brianne Benness Profile picture
7 Oct
the reason this gets so many hackles up is that every disabled person has had the following conversation:

disabled person: fun fact, my disability prevents me from doing XYZ.

some jerk: that sounds made up, real disabled people don't have that problem.

dp: but... I'm... real?
it's like yes, I know my disability sounds made up to you because

1. non-disabled people have been saying the same thing to me my entire life, and

2. you clearly have limited-to-no exposure to so-called real disabled people, which is pretty typical.
every single discourse about whether or not some inciting bs is ableist includes just an astounding number of people arguing that real disabled people talking about our actual problems are just trolls describing challenges no human could possibly face. 🤡
Read 6 tweets
Brianne Benness Profile picture
7 Oct
if you had a 2/day pill organizer that was color coded coral & mint blue (aka an orangy red & a greeny blue) which color would you use for your morning meds if there were no labels making the decision for you?
(yes this poll is about me and my pill organizer, which I love.)
livesagely.com/product/sagely…
dang friends, my brain is currently in the minority.

I definitely chose via the association that daytime light is bluer and nighttime light is oranger. (esp on say my phone, which gets rid of blue light (?) in the evenings, so evenings are Very Orange to my brain apparently.)
Read 4 tweets

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