There’s this weird idea that if you just did everything “right,” you wouldn’t be sick. And it’s like…if that were true, a lot more people would be magically cured by now. It’s not that simple, and it’s exhausting having to defend that.
@dr_immuno29 So true. 🙏🙏
A 2025 survey of 828 patients by PRIME Inc. revealed an average of 15 years from first symptoms to diagnosis.
Time to drop the “mild sicca syndrome” model. It’s a prevalent, serious, multisystem disease. We. need to do better!
https://t.co/v9esjS8zLa
Doctors, stop doing it.
Just stop.
You are personally and collectively responsible for billions lost each year to lost work hours, complications from undiagnosed/misdiagnosed disease, not to mention unquantifiable psychological harm, and the blast radius of family, friends, children, and carers who have to step in to care for the (mostly women’s) lives you are destroying.
It’s not hard. If someone reports symptoms, listen to them. Believe them. Investigate. Go back to the drawing board. Smash two brain cells together.
We’re often telling you our diagnoses. You just have to listen and respect. These are basic expectations of adults generally, and professionals in particular.
When people with severe chronic illnesses say they want to die, they almost always do not actually want to die. They want so terribly badly to live, but have lost their quality of life and autonomy after having been abandoned by the medical establishment and often family/friends/society. It's usually only after trying and failing to find better treatment or support, when they can see no way forward, that they wish for death.
Medical history is full of "imaginary" illnesses that turned out to be real. Ulcers. MS. Long Covid.
And patients were right all along.
So if you're healthy, one ask: When someone tells you they're sick, the first instinct should be to believe them.
Doctors should not be able to hide behind the veil of “clinical opinion” to shield themselves from defamation claims.
If they write factually inaccurate or misleading statements in your record that misrepresent your character, materially detriment your ongoing care, and reasonably cause embarrassment or distress, you should be able to sue them.
#burnitdown
People start getting angry when your illness doesn’t improve. Eventually, you stop being seen as someone who is sick and start being seen as an inconvenience, even a source of annoyance, to people who don’t even know you.
i get so pissed off when i see the “women, here’s how to stop fawning/people pleasing so you don’t get an autoimmune disease” or “women, we literally stress ourselves out to the point of getting autoimmune diseases!” shit
Have you noticed that women who don't accept disrespect, dishonesty, or manipulation, are often labelled as difficult, toxic, crazy, bitter, or complicated?
I have reached the point of chronic illness where I don’t want to be around other people because they continue misunderstand me.
They can’t see what I’m living with, they can’t feel it, and I want to scream it at the top of my lungs.
I can’t do anymore “just go for a walk”, “just get out more”, and overlooking and disrespecting the vast, vast amount of fortitude it takes to live with invisible illness. Having it mischaracterised as a character flaw, over and over and over again, and then going home and crying about it feeling more alone than when I left.
At the same time, I know I need human interaction. That I need to keep living to some extent.
How do you go about this?
The most powerful diagnostic tool I've found over the years has been a detailed patient history. Listening above all else. Everything else has been supportive.
We’ve overcomplicated what works.
In my roughly 30 years of medical practice, I've noticed something really disturbing:
The sickest chronic illness patients often got the least effective care. Many doctors just gave up.
Where there's life, there's hope. Docs should never give up.
Disability is not a vacation. It’s a 24/7 job.
You’re forced into legislated poverty.
You have to endure ableism, abandonment & gaslighting
You live with pain & suffering that would send most folks to hospital.
You fight for medical care, social supports & dignity.
@brownecfm These are all new terms for ‘hysteria’ - central sensitization, functional neurological disorder, anxiety, etc etc. Women are consistently labelled, dismissed, and get sicker and die because of the laziness of medicine.