On unsolicited advice for chronically ill folks: Why do we get so upset when you recommend a book, diet, vitamin, exercise, essential oil, tea, meditation, etc?

THREAD. 🧵 #NEISvoid #ChronicPain
1. Because it’s condescending. It suggests that we haven’t done our own research, or aren’t smart enough to consider these ideas. (Anyone recommending yoga or veganism, this is for you. It’s not like we haven’t heard of these things.)
2. Because it feels like victim blaming. It insinuates that it’s our choice to be sick because we don’t want to try new ideas, or we’re just too lazy or closed-minded to do so.

(Truly, if our conditions had easy & accessible cures, we wouldn’t be sick!)
3. Because it’s not what most of us want from our friends: Support. Offering a quick [non]fix derails conversations and gets you off the hook from being truly present with us and our experiences.
4. Because it erases our reality. Chronic illnesses are, as the name suggests, chronic. They aren’t going away. When you refuse to acknowledge that, you’re refusing to see our lives as they are. That compounds the isolation we experience.
5. Because if we wanted advice, we’d ask for it!

Truly. I have asked friends **who are also chronically ill** for advice many times. It’s been hugely helpful! But if we don’t ask, don’t try to backseat drive our medical care or lifestyle choices.
Those are my 5 reasons. If you’re also chronically ill and/or disabled, feel free to add your own reasons in the replies. I’ll add them to the list and highlight any differing perspectives!
An important point on why healthy folks try to "fix" us:
7. It's almost never informed advice.
9. Because outside advice trivializes our complex experiences and conditions.
10. Because the recommendations often fail to account for (or exacerbate) marginalization in medical care.



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More from @SaltySicky

7 May
This semester my @UUtah Disability & Comm students did Community Activism Projects instead of exams. They identified an issue related to disability and access in their communities, then spent the semester planning and doing something about it.

The projects were AMAZING. 🧵
The only rule was that the projects had to be outward-facing and engage audiences beyond our class, which is why I’m sharing a few here.

There were several more, including some personal/medical ones that I’m not sharing for the sake of privacy, but they were just as awesome.
One duo conducted surveys about disability and access in the U’s Greek Life recruitment practices. They created a detailed report of the results and included research-based recommendations for future practices, which they presented to the U’s Panhellenic Council.
Read 11 tweets
6 Apr
What makes disabled people #HighRiskCOVID19? I'm lesson prepping for next week's lecture on disability justice, so I made a list!

Heads up: Only the 2 items are directly medical. The rest have to do with sociopolitical issues related to ableism.

THREAD. (Please add to it!)
Starting with the obvious:
1. Medically, some disabled people are more likely to die from COVID or have severe cases if infected. Chronic conditions related to immune, respiratory, & cardio systems are major factors here, but this isn't anywhere near a comprehensive list.
2. Disabled people have to work. The choice to "stay home" is a false one for most disabled folks. We have to pay rent, medical bills, food, and other basic living costs. Further, many disabled folks are kept in entry-level positions in "frontline," public-facing (riskier) jobs.
Read 25 tweets
11 Dec 20
I know many folks are struggling with getting things done these days, but I’ve been more productive since the pandemic began than I ever was before it. Why? Academia has been more accessible than ever to chronically ill grad students.

#AcademicChatter / @chron_ac THREAD ⤵️
Without mandated wake up times, evening classes, or extra events to attend, I can work when my body works best—and rest when I need it. Virtual events & conferences also mean I can participate while taking care of my body at home and avoiding flares from travel.
I’ve been able to spend more time reading, writing, & doing teaching prep because I’m not wasting energy managing symptoms that come with typical academic life. Issues like sitting for long periods and forcing my body/mind to work during symptomatic times of day are gone.
Read 6 tweets
15 Sep 20
THREAD // On forced sterilizations and ICE: This is not new for the US. Especially in closed-door systems like immigration centers, prisons, asylums, institutions for disabled people, etc., it’s a long-standing form of eugenics and social control. Sources below ⤵️
The current ICE issue: google.com/amp/s/lawandcr…
A general, accessible (and terribly titled) summary of sterilization in the US: mic.com/articles/53723…
Read 10 tweets

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