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Brianne Benness Profile picture
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24 Nov, 5 tweets, 1 min read
A frustrating thing about chronic illness is that the voice telling me to be grateful for whatever capacity I have because It Could Be Worse is often literally the voice of my own experience and not some external jerk who Doesn't Get It.
voice on my left shoulder: remember when you couldn't leave bed for MONTHS because of some fluke?!

voice on my right shoulder: remember when you went hiking regularly even AFTER your pots dx?!
For me, this is a way that brain/shoulder gremlins try to invalidate whatever I'm feeling about however I'm doing.

It gets loud in here sometimes is all I'm saying, even as I think I'm getting better at tuning it out.
(mandatory reminder that you can support my work collecting chronic illness stories if you wanna & you can comfortably spare a $/£/€)

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More from @bennessb

Brianne Benness Profile picture
25 Nov
Ok honestly I feel like the thing that healthy people don't get about diagnosis is how much it feels like getting the key to a cipher.
Like you spend [months/years/a lifetime] alternately tuning into and out of your body with much concerted effort, but every time you tune in it's just chaos.

Nothing makes sense and everything feels terrible. And those feelings compound each other.
And if you get misdiagnosed (which happens a lot), you're left with this unease like... why hasn't the chaos become a bit more orderly?
Read 7 tweets
Brianne Benness Profile picture
25 Nov
I know PT won't reverse all my symptoms or anything but it's honestly so helpful for me that I'm raging pissed about the myriad ways that PT is inaccessible.

Undiagnosed? No PT.
Chronic condition? Acute PT only.
Hypermobile? Ignorant PT can cause irreparable harm.

Plus, cost.
Like I'm 33 and I've been hypermobile all my life and this is the FIRST TIME I've had an appropriate exercise routine to target weakness & tension that are directly caused by hypermobility.

Three decades and nobody was like 🤔
Because of my whole Thinking About Anatomy Triggers Syncope problem, my current framework for thinking about this whole deal is that our hypermobile bodies just like... settle over time as ligaments crap out and muscles spasm to compensate.

Like how buildings settle over time.
Read 6 tweets
Brianne Benness Profile picture
24 Nov
the Dysautonomia International sponsors list is cracking me right up today.

(with much respect & gratitude for the work DI does) Screenshot that reads “We appreciate our sponsors!” foll
when you know, you know. 🧂
"hello website visitor! you seem like you might need more HYDRATION in your life!"
Read 6 tweets
Brianne Benness Profile picture
23 Nov
There is such a fine line between asking people not to use medical language as a euphemism for a non-medical situation and outright gatekeeping medical language so that undiagnosed folks are afraid to use it and I don't know, I worry about the harm that does.
[medical trauma]

For a lot of people (especially people who are diagnosed as adults), a lifetime of gaslighting means that it is incredibly difficult to accurately or confidently describe a lot of symptoms while seeking diagnosis (or in general).
[med gaslighting]

It turns out that a lot of people live with *very serious symptoms* that they don't know how to label correctly specifically because everyone has always told them "you don't have [serious symptom]! It's so serious that you would definitely know if you had it!"
Read 9 tweets
Brianne Benness Profile picture
29 Sep
So as a community, we all know that some disabilities cause chronic & degenerative discomfort and some do not, right?

And that the desire to be physically comfortable is not inherently ableist?

Discomfort can be pain, fatigue, nausea, vertigo, and on and on.
People actually go into remission from chronic illness all the time. For chronic illness, a lot of people use the term remission inconsistently. So let's say that remission means no symptoms & no ongoing symptom management.

People respond differently to remission.
Some people go into remission and then decide from their study of n=1 that they are now qualified to direct everybody into remission, and that anybody who doesn't achieve remission themselves is at fault.

This is pretty ableist.
Read 5 tweets
Brianne Benness Profile picture
28 Sep
People who are offended by the very idea that somebody might not want their unsolicited advice really do tell you who they are.

(this is a vibe, not a targeted subtweet)
"you must not want to know what's making you sick if you don't want unsolicited advice."

Fuck. You.
I cannot stress enough that the difference between an anecdote about You, An Internet Stranger Who Was Actively Seeking Advice and Me, Who Explicitly Was Not Seeking Advice is that one of those situations is consentual and ONE OF THEM IS NOT.
Read 5 tweets

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