Discover and read the best of Twitter Threads about #ChronicIllness

Most recents (11)

Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

Read 16 tweets
Okay, you know the deal. Tech tweets by day, #ChronicIllness tweets and miscellaneous rants by night.

CW: medical stuff.
I had an experience today that kind of sent me over the edge in terms of what costs chronically ill people are expected to shoulder. (Yes, I'm talking about US healthcare. No, I don't want your "just move to Canada/France/wherever!" suggestions.)
Chronically ill patients often are misdiagnosed for years, if not DECADES. That means multitudes of specialists over those years, along with many, many, often painful, tests. In addition to the physical and emotional toll this takes on a person, it also takes...
Read 22 tweets
The accuracy of that brain fog article.

"What if they think Iโ€™m seeking drugs if I ask about a specific treatment? What if they think Iโ€™m just hypersensitive to everything going on in my body and dismiss it? What if this list is too long and they think Iโ€™m making it up?"
I kept trying to explain to an older relative what was happening to me this summer.

She told me that happens as you age.

[Rihanna Incredulous look gif!]
No ma'am. I did not, in two years, go from being able to give 60 minute talks on various areas of my expertise?

To temporarily not being able to remember the word hospital.

From aging.
Read 8 tweets
#Disability twitter, #medtwitter , let us have a discussion about patients discussing #MedicalTrauma on here. A Thread:
#chronicillness #ChronicPain #Chroniclife #MedTraumaChat #Spoonie
2) Last night, a fellow advocate posted a very handy guide for HCPs & patients abt treating patients who are trauma survivors: Trauma Informed Care - Disclosures and Care Transitionsโ€ฆ #medtwitter #Disability #chronicillness #medtraumachat #spoonie
3) It's a good resource for both #patients & HCPs, please read it if you have a moment.
This led to a helpful discussion about #MedicalTrauma between an HPC and the person who wrote this guide, who has had experiences with this,
#Disability #medtwitter #chronicillness #Spoonie
Read 13 tweets
I signed this petition. I never sign online petitions. But #Afflicted cannot be allowed to stand. via @Change
Documentaries are meant to give a view of a subject or topic on a FACTUAL basis. Their opinion isn't supposed to be centered unless the subject is themselves.
#Afflicted is heavily slanted toward the erroneous assumption that the chronically ill patients are


have psychological illnesses rather than physical diseases,

or somehow in denial.

And I ask you- to what end?
Read 13 tweets
With the exception of my closest friend, I didn't know other people had conflicting #chronicillness or more than one. Not until I went online.

Then I found people who understood that some suggested solutions aggravate other conditions.

It's a comforting, peaceful break not to have to explain that what solves one illness aggravated another.
It's great emotional support to be able to talk about the health issue of the day, to vent and not be accused of wanting something other than understanding & commiseration.

Read 4 tweets
1/I've said many times that I am poor because I am unemployed (except for my writing) and I am unemployed because I am disabled.

I am now officially rejecting that shit.

I am still disabled. I still am not employed.

#Disability #ChronicIllness #poverty
2/But the reason I am unemployed is because society has deemed me disposable. This isn't on me.

#disabled #DisabledPeopleMatter #PplWDisabilitiesMATTER
3/It's because society has decided the WANTS of the abled (specifically in my case, to use fragrance and decorate with balloons) are more important than my survival. This isn't on me.

#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
Read 18 tweets
The MAJORITY of food trends are either false or harmful to #cancer patients and people with #chronicillness.

Spread the word to people not to medically diagnose their friends when even the docs and naturopathic practitioners, and trusted sources are often wrong!
Even in cases where it is proven that changing a part of your diet fixes something in healthy people?

Our bodies are not normal. We. Are not normal. Our bodies often have multiple conflicting ailments where fixing one thing breaks something else.
Sometimes we have achieved a happy medium that allows us the most freedom, rather than a near-cure that keeps us prisoner to treatments we canโ€™t afford.
Read 4 tweets
1. If you want to understand what causes Crohnโ€™s disease, ulcerative colitis, or actually many other chronic illnesses, and why most medicine doesnโ€™t seem to treat it, I want to explain what may be happening. (thread)
#crohnsdisease #ulcerativecolitis #ibd #chronicillness #crohns
2. This hypothesis is a collaboration between my wife and I, and is based on longstanding research + some new studies that have come out in the last year or so.
3. Crohnโ€™s disease is a chronic inflammatory condition of the gastrointestinal tract. Like many of the other inflammatory bowel diseases, it can be a debilitating illness that makes life a living hell. If it gets bad enough, it can kill.
Read 75 tweets
This is a great suggestion.
Part of the reason I save my threads is to put them in a format I can turn into blog posts or essays etc.

My problem of course is being a #spoonie with #fatigue issues.
If you have an #chronicillness with chronic fatigue and/or #chronicpain that saps your energy & you're an author...
Read 7 tweets
Some people are curious how not having my full course of meds keeps me from working full time.

This is where I'll start the story of #myspoons today.
Not that I owe them shit. But maybe you or a #spoonie squad member of ours might find it relevant or helpful.
So in a nutshell, the less pain I'm in? The more I can do.

"But Tinu" some y'all say, "If your work is mostly digital, aren't you good as long as you have a laptop & a computer connection?"

Haha nawl!
Read 22 tweets

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