Patients with Power

Patient-scientist fighting for medicine based in SCIENCE; NOT BIAS⚡Calling out harmful healthcare culture⚡Breaking down difficult doctor behaviour✍️🧐

[Patients with Power @PtsWithPower]

How would you describe the trauma / effects of doctors dismissing you, mocking you, gaslighting or minimising your symptoms when you're really sick or in pain, to someone who hasn't heard about it but wants to understand? #NEISvoid #EDS #pwME

[Patients with Power @PtsWithPower]

I was just trying to survive.
#NEISvoid

[Patients with Power @PtsWithPower]

@DisabledDoctor Cognitive deficits definitely hardest to accept. 🫂

[Patients with Power @PtsWithPower]

@DisabledDoctor I used to have anxiety that stopped me from talking too, I feel you on that. Sorry you went through it too.🫂 I have that word finding issue now too, and working out how to put what I want to say into words can be so draining that I just have to just give up mid-conversation.

[Patients with Power @PtsWithPower]

Hey #NEISvoid, I'm on threads if you'd like to follow me there 😊⚡ https://t.co/kDeqQd53tE

[Patients with Power @PtsWithPower]

People who have #depression are not addicted to our antidepressant medication.

People who have #ChronicPain are not addicted to our pain medication.

[Candace D. @DiaryofaSickGrl]

“We all have the same 24 hours”

As a chronically ill/disabled person I have a lot less usable hours than a healthy/abled person. And of those that are usable they’re still not as usable as they used to be when I was overall healthy. Lots of pacing/resting.

[Patients with Power @PtsWithPower]

@kerinaples @CMerandi Long ago

[Patients with Power @PtsWithPower]

WHAT DO WE HAVE TO DO - go on a meds strike💊 and hurt big pharma - where the power's at 💰 - so they pressure the government on our behalf🏛️??

To start treating sick people as human beings and enforcing clinicians to meet their basic job requirements and ethical codes? (listen to patient, treat with respect, stay up-to-date in field etc...)

Obviously we can't all stop taking our meds but I mean, appealing to compassion has not been working...
⚡️ #NEISvoid #disability #pwME #DoNoHarm

[Patients with Power @PtsWithPower]

WHY is this happening AGAIN?
⚡️ https://t.co/4am0FT5jqu #NEISvoid #pwme #MECFS

[Patients with Power @PtsWithPower]

WHY is this happening AGAIN?
⚡️ https://t.co/4am0FT5jqu #NEISvoid #pwme #MECFS

[Patients with Power @PtsWithPower]

Docs,
How many patients have you misdiagnosed?
Trick question. You'll never know.
⚡#MedEd #eds #pots #pwme

[Patients with Power @PtsWithPower]

Doctors often don't go by the book when it comes to treating patients. They like to cut corners. They usually don't see the consequences of the corners they cut off. #ChronicIllness #Disability

[Patients with Power @PtsWithPower]

@2laurabone Yes!! I already don't have the time or energy to get through things like my washing or all the basic hygiene tasks I need to do in the day, and you expect me to be able to find 15 minutes a day for knee exercises?

[Patients with Power @PtsWithPower]

Argh when people suggest you do something and follow it up with "It's just 15 minutes a day - everyone can find 15 minutes"

If I took 15 minutes out of every day for all the things I'm supposedly able to find 15 minutes for, I'd have no day left!

[Patients with Power @PtsWithPower]

After asking to finish speaking, he suddenly refused to examine me and wrote a referral that would not be taken seriously by anyone. "She worries she has #cancer" - but didn't include any of the red flag symptoms or signs.

He tried to hide it from me, then refused to change it.

[Patients with Power @PtsWithPower]

What have doctors done to retaliate against you, when you tried to correct them or advocate for yourself as a patient?

I'll add some of mine below.
⚡#NEISvoid #heds #pots #pwme

[Patients with Power @PtsWithPower]

Here's the most recent retaliation:

I needed an urgent biopsy. My GP was away so I had to see a random. I wrote a few sentences beforehand to read out to describe symptoms etc. He interrupted me before I could finish, and I just asked for him to let me finish.

[Patients with Power @PtsWithPower]

@emmiskyten Sounds about right. 🧱🙂‍↕️ (That is me thinking about what conversations with these types of doctors are like)

[Patients with Power @PtsWithPower]

@emmiskyten Oh god I'm sorry. Why are they so allergic to research!?! 😩 This stuff is so harmful 🫂

[Patients with Power @PtsWithPower]

Doctors have power over their patients. Some are responsible with it, many abuse it. It's not just carelessness and being overworked.

Let's be real for a second: There's nothing to stop people with high functioning #narcissism or psychopathy from becoming doctors. They're protected by the assumption that people become doctors because they want to help people.

In my experience, I've found some to just like the power trip.

⚡#ChronicIllness #ChronicPain #DoNoHarm #spoonies

[Patients with Power @PtsWithPower]

What have doctors done to retaliate against you, when you tried to correct them or advocate for yourself as a patient?

I'll add some of mine below.
⚡#NEISvoid #heds #pots #pwme

[Patients with Power @PtsWithPower]

Urrrgh every time! 😆😭