Discover and read the best of Twitter Threads about #ChronicIllness

Most recents (24)

We don't talk enough about the medical gaslighting that happens in the natural/holistic/alternative medicine world and how incredibly destructive it is for #disabled and #ChronicIllness folks. #NEISVoid Thread 🧵
Today I saw a new massage therapist who specializes in neuromuscular work, hoping he could help with muscle spasms in my neck and jaw. He did, but here's why I will never go back to see him: First, he looked at the history form I filled out and out of twelve medical conditions 2/
I checked, he zeroed in on "anxiety." He told me at length about the 9 anxiety muscles he, and only he, knows how to release to make anxiety go away. I never said I wanted help with anxiety. He ignored my #EhlersDanlosSyndrome and didn't listen when I explained what massage 3/
Read 21 tweets
@kaiser is cutting the perocet i’ve been taking for 6 years since injuring my spinal cord. i have endless neuropathy and intense muscle spasms every single evening. now, my lumbar L5/S1 is acting up and i have pain from my right back to my ankle. it’s like walking through fire.
every single day of the last 6 years i’ve thought of suicide.

every. single. day.

but i’ve always had hope. that something would turn around. some sort of medical miracle would happen. i don’t have that hope anymore. i can’t face a lifetime of excruciating pain. it is hell.
i don’t understand why people have to be so cruel? because the sackler’s forced a drug on people who didn’t need it, now the people who really do need it, like me, no longer have hope.

these tweets do not mean i’m suicidal. i am not.
Read 6 tweets
#NEISvoid, recently found out that Singulair is available in generic form...I had the familiar “it helps but I’m having untenable reactions to fillers” w/the original. Has anyone had issues with the original and found success w/a generic?
This was years ago, before #MCAS set in (especially hardcore). But I still had an issue with fillers.

I need to look up the brand/possible generics, but I REALLY wish I knew what the problematic filler was. Even if Singulair was a different brand, I often react to TEVA meds🧐
I wonder if they (TEVA) often contain something that has a high incidence of reactivity? I’ve seen several people with a TEVA issue. I’d really love to get to the root of it.
#ChronicIllness #Mystery🧐
Read 4 tweets
It’s both exhausting and frustrating to fight through trauma & health issues (driven by said trauma), only to not have access to help.

#DisabilityTwitter has been lovely about liking/sharing my fundraiser, but MANY of us have $ issues.
I thought fighting through this trauma, through so many other things that I haven’t mentioned, would be a huge step.

Yet I’m still being blocked by lack of access. The people I know IRL largely seem to have written me off, bc I “didn’t get better fast enough.” It’s soul-crushing
Not ONE person that I knew in my “abled” life has liked/shared/donated to my fundraiser this far - aside from an ex, & his friends. The rest were strangers.

The same people that had no problem taking part in my own past (sizable) generosity now act like I don’t exist. It HURTS.
Read 6 tweets
Our research on #HigherEducation #inclusivity for students with #ChronicIllness is now published by @JDisSoc!!

We discuss stigma towards chronic illness as a #disability, and aim to influence HE practices.

Pls rt! 🎓
@JulieH_Psyc @EmHaz_Psy
It will be open access soon, but if anyone who doesn't have an institutional login would like to read the paper in the meantime, then I'm very happy to send you an e-print
The above paper might hopefully be of interest to some of you!
@TabouMagazine @DisInHigherEd @DisabledAcadem @ChangeDisabled @chronicinclude @chron_ac @AbleismAcademia @EnabledInAca @KeeleUniversity

And @CDSLeeds, your archives were really helpful🙂
Read 3 tweets
Well folks...this is making the rounds thanks to the eagle eyes of @yahoocyd! (Thanks, Cyd!)

You read that right. 12 Steps For The Chronic Pain Patient.

Naturally, I have a few thoughts...

My initial reaction was disbelief, then utter dismay. Really?😔
The whole thing smacks of the pulpit, but let's dig in, shall we?

We are powerless over pain. Uhm...NO. Not at all.
That's what medicine, treatments, & coping mechanisms are for. Helping manage pain to a more tolerable level so one can be more productive & joyful.🤔🤷‍♀️
The second part of Step 2 begs a response as well.
"We admit that illness/pain makes our lives unmanageable."
No, I don't admit this at all. People living with #disabilities are creative & careful in how we manage our lives. This sounds like learned hopelessness AND helplessness.
Read 8 tweets
Megathread: 1 Trying to unpick reasons why people disengage from those with #chronicillness such as #ME My thoughts below. Taken a couple of months! Feel free to add #neisvoid #pwme #friendship #relationships #MyalgicE #family #ghosting #carers #Grief #DisabilityTwitter #MECFS
2. Fear. They would rather not contemplate how life can be so suddenly derailed. They cannot bear to think about suffering and don't want to face up to such realities
3. Because they love you they find it too hard to contemplate your suffering so shy away from it
Read 16 tweets
Drs: "I don't know what's wrong with you."

Education: 4 yrs college, 4 yrs med school, 3-7 yrs residency, & passing a licensing exam

Me: It's celiac disease (insert 3 other dx's)

Process: Months of research, tests & a NP

Note: I've been right more than Drs have.

Chronic illness and disabled patients know that we help ourselves and each other bc Drs can't or won't.

Our community is filled with stories like this. I'm not an anomaly. This is the norm.

#chronicillness #disabled #DisabilityTwitter
And, if you're a Dr reading this, instead of getting angry or defensive, try actually listening to us for once in your career. You might learn something.

Until you and the medical community changes, we'll never trust you.
Read 4 tweets
CW: GET/ Eating/ #MECFS misinformation

I saw an image today talking about things people with #chronicillness want to hear. The list included “I googled your condition.” I almost shared bc I do appreciate when people want to learn but cringed dt misinformation. Then...
I googled my condition. Surprisingly, the first set of info that popped up was not complete but didn’t necessarily contain wrong information. So I clicked on the articles...The one from India caught my eye. “What is #Chronicfatiguesyndrome & Effective Ways to Deal with It” Oh boy
1)Fix your sleep/ get more sleep 2) take vitamin D 3)Eat Better &4) Exercise. This is a new article @timesofindia PLEASE educate yourselves/ staff & the local Doctors. Your take is outdated and HARMFUL. Here is a resource in support of my statements…
Read 5 tweets
#chronicillness brain is weird. A thread.
Brain: For months I’ve had horrible daily sx. I get a day of lower symptoms & go for 2 short 5 minute walks. My legs hurt from exercise! (Sad but also this pain is mostly muscle workout pain!) but my other sx seem low this very second!
Clearly... this MUST mean I’m getting better!

Body: *Ahem* 1) you walked less than most people do on the way to their office. 2) you’re forgetting about the near #migraine from a Dr. appointment 3) you’re forgetting the #tachycardia from putting your scooter in the car.
4) oh and today when you had the high BP standing up that dropped back to low w/in seconds and you felt it!? 5) You used a scooter today 6) left knee is outshining your right as far as pain and on fire, 7) you’re
wired and tied and up at 10pm tweeting because you can’t sleep.
Read 6 tweets
One of the most utterly heartbreaking things I had to learn when an illness I had no idea about was destroying my life was “there’s no point going to a #GP without a fucking itemised list of goals. #chronicillness #disabled
You need to give them the service you want them to refer you to, often with an actual consultant’s name and sometimes with their secretary’s email address. And you need to phone back next week to make sure they’ve actually put the referral through. And keep phoning to chase it.
(If you, like me, are #autistic and find phone communication nightmarishly difficult, you need to suck it up because no GP seems remotely willing to communicate with patients by email).
Read 9 tweets
Finding connections & advocating has been so helpful for me.

Here’s a thread attempt, w/my limited/developing advocacy skills.

Tips/pointers/thoughts from #RareDisease, #chronicillness, #disability, #NEISvoid, #hcldr, #patientchat communities?

Let’s use #RareAdvocacyAdvice
My journey started with making social accounts, then posting a few thoughts, ideas, questions, & pleas for help. I used hashtags such as #RareDisease, #ChronicIllness, #Disability, #NEISvoid, in general, & then some that are more specific to my condition.

I was very fortunate to find an org that was developed to specifically for my #RareDisease (@MitoAction). They have incredible support, including weekly calls.

If there’s not a specific community for you yet, you could make one like @OnceUponAGene did. 💚

Read 11 tweets
I'm trying to write a comment or email to my city's school committee, who are being pressured by parents to further open in-person learning while we deal with the highest #COVID numbers we've had to date. Our hospitals are overflowing. Our test centers are swamped.
Our governor had hospitals cancel "elective" procedures weeks ago. I know people, myself included, who have had to delay medical care b/c of #COVID. Maybe it was ok to delay, for a few months. It's been 10 months & some of us are still waiting... 2/?
for it to be safe enough to get care. Safe enough to have the in-home help we need. Safe enough to believe we will get through this without losing more ground in our #ChronicIllness. We are sacrificing, or have been sacrificed. But god help us if we expect privileged parents 3/?
Read 8 tweets
#chronicillness - a thread
Imagine being 12. A preteen in between 7th and 8th grade. The lower back pain started as a dull annoyance, then a constant vice tightening on my lower half. I was written off as "growing pains." Meanwhile I'm literally crawling to the bathroom so I can
Take a 4 hour scorching hot bath. Daily. ER says constipation sends me home. 2 days later I'm back at the ER in a wheel chair. My uterus almost ruptured because I was written off as over exaggerating. I had to have emergency surgery TERRIFIED AND 12 YEARS OLD. Fast forward 19
Years later.
The list goes on.

In walks #COVID19
My immune system is already screwed so #selfisolation here I come. Nearly everyone in my close family is high risk. I put off appts
Read 5 tweets
What you've always wanted: 2 jellyfish, floating in the sea, alongside an x-ray. This is a snow globe ring. H.D. told me to make it. #HildaDoolittle #Modernist #DisabilityPride #Neurodiverse #ChronicIllness #Jewelry #YouGetProudByPracticing
The jellyfish are close together perhaps looking at the X-ray. Unclear what the X-ray identifies as it is a miniature and floats in the sea.
"After World War II, H.D.’s world was increasingly 'influenced by an alternate body,' to borrow Jennifer Bartlett’s definition of the new poetry of disability," writes Cynthia Hogue for @jacket2mag…
Read 7 tweets
Hello #chronicillness friends. This is a very important thread. Recently @sciam published a promotional (instead of journalistic) article promoting the idea that functional neurological disorder (FND) is a legitimate neurological illness instead of repackaged hysteria. 1/
Many physicians have denied what we experienced patients, particularly women, know to be the truth: FND is the newest hysteria term they are pushing very hard to sound like something “new.” Recently this discussion was discovered on Reddit that proves what we knew all along. 2/
FND is a wastebasket drs use to fool patients into thinking they’re being taken seriously when in they actually want to punt them on mental health for their own convenience. They do not give a crap about your well-being. @DianeOLeary has discovered this in medical literature. 3/
Read 7 tweets
Something I’ve always struggled to try to explain to able-bodied friends is the need to “perform” pain to be taken seriously by healthcare workers.

So I thought I’d do a thread on it...

#ChronicPain #NEISVoid #ChronicIllness
Pain is relative. So my 5/10 is not the same as anyone else’s 5/10. And, when you’re in chronic pain, your pain tolerance necessarily goes up so that you are not roaring and screaming in pain 24/7.
As well as that, pain is exhausting. If you’re in pain all the time, you can’t afford the energy to be screaming in pain 24/7. Sometimes you don’t even have the energy to grind your teeth or breath harder.

But why is that a problem...?
Read 9 tweets
When asked to add to this piece in ⁦@guardian⁩ Observer, I thought it would be a great opportunity to spread awareness of #LongCovid. Instead it’s pushing outdated views on #MECFS and mental illness. I am furious and will be writing to complain…
Instead of highlighting how hard we have to fight to get heard by doctors, and the long struggle for us to get investigated, Eleanor suggests we are pushing for ‘superfluous testing’
Instead of showcasing the lifeline that support platforms like @long_covid and @LongCovidSOS have been for people isolated with this illness, she suggests these groups promote dangerous thinking
Read 6 tweets
The point on the potential threat of dismantling entire (albeit unscientific) branch of medicine—psychosomatic medicine—is well taken. It’s why we’ve seen such extreme behavior on the part of psychosomatic proponents when their logic is questioned: calling patients militant 1/
and making false claims of threats and harassment, setting up fake accounts on this platform to promote “FND” as something other than repackaged hysteria, and I was even made a personal target for abuse by a local psychiatrist because of my stance that hysteria be abolished. 2/
They seem to know, especially with the coming large population of #longhaulers and #LongCovid patients, that the jig of combining CBT with some behavioral or activity protocol and calling it a “treatment” is finally probably going to be up. We in the patient advocacy 3/
Read 5 tweets
@ReeseSTyrell 1 of 2
#Surveillance of millions of Americans, physicians, pharmacies; brought to u by #DEA
#DataMining in #healthcare incl but not limited 2
#ChronicPain #intractablepain #OUD
#Anxiety #PTSD #Cancer
Request fo proposal:…
See pics for "Statement of work"
@ReeseSTyrell 2 of 2
Remaining pics, "Statement of work" required for proposals to #DEA #Surveillance & #DataMining in #healthcare!
States & DEA already going after drs who dare 2 treat, Rx med necessary #opioid analgesics for #ChronicPain #intractablepain pts

#MMEMafia will only get worse.
@ReeseSTyrell #PatientSurveillance by #DEA…
#DataMining in #healthcare for specific populations.
Have #chronicillness #ChronicPain #RareDiseases #Anxiety #OUD? Your medication will determine if you'll b under surveillance.
Think your privacy is protected? Think again
Read 4 tweets
Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
#DysConf2020 Neurogastroenterologist @LauraAPace talking about the multidisciplinary #EDS clinic she helped to set up -- time to dx for the geog area was v long, time to being seen by a clinical geneticist for referred pts was THREE to FIVE YEARS.
Wanted to track comorbid disease burden/syndrome burden. Clinical phenotype was often more severe than the diagnostic label suggested (for hEDS, etc). Need a more comprehensive dx for these patients.
The clinic ultimately didn't work bc, when the clinicians from the specialist EDS clinic recommended patients be followed up with formal screening for potential autonomic dysfunction,& passed on the testing/mgt outline to their primary care physicians...
Read 12 tweets
Tomorrow's to-do list so far:

1) morning ablutions, etc
2) Stanford Neurodiversity Summit
3) diarise stuff
4) start putting meds into @NPSMedicineWise app
5) email dietitan to confirm appt time, check on what details to prepare ahead of appt.
6) reply to emails from endo & send her drug & PyoG info/pics
7) tidy up files, apps on phone, backup
8) start transferring over to new phone
9) physical phone stuff: case, screen protector, etc
10) figure out where to order from/order book for S's Dad's birthday.
11) email upper airway ENT prx re next Tues appt; they were supposed to have sent a confirmation, info on where to find them, permission to travel to appt, etc, but yet to receive.

12) work out new glucometer (Read the darn instructions first! Text @louiseallana if stuck).
Read 12 tweets

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