#SalamonSMD on X wrote:

Calling #MedTwitter and #LongCOVID, #PEM & #MECFS circles:

I am compiling evidence against graded exercise therapy. Please share your favorite papers in replies.

#PatientAdvocacy #BelievePatients #PacingNotPushing #PatientSafety #LongCovidAwareness #pwLC #PatientLed

What’s happened to curiosity in medicine? A story of two appointments.

If you’re a healthcare worker and your patient says they’re in pain, a medication isn’t working or something doesn’t seem right … listen to them. If what they’re saying seems “odd”… don’t dismiss them out of hand. Get curious. Ask questions. Listen to the patient.

The human body is incredible and unique. We all respond in different ways - and we learn more about the human condition every day. If something isn’t “adding up”… it could be a missed diagnosis.

Here’s one of my most frustrating examples:

I go to the doctor with a strange type of infection that is usually only seen in end stage AIDS patients.

Doctor: “Have you been tested for HIV?”

Me: “Yes - it was negative.”

Doctor: “huh. You sure? Let’s test you again.”

It comes back negative AGAIN

Me: “so what now?”

Doctor: “I don’t know. That’s really weird. Here’s the medication we would give you IF you had AIDS.”

That was IT. No follow up. Zero curiosity. No testing to determine WHY I had an infection only seen in AIDS patients when I did not have AIDS. Heck they wouldn’t even run an immune panel to take a closer look at my CD4 and CD8 count. It was just “sorry about your luck but this is not my problem.”

Contrast that with one of my BEST experiences with a VERY curious doctor:

I was there for suspected POTS which I was diagnosed with. In the process the cardiologist found an aneurysm and felt that given my age, lifestyle and persistently LOW blood pressure it was “odd” for me to have one.

She gave me a huge questionnaire of seemingly unrelated questions to fill out - about everything from dental issues to gynaecology and what I was like as a young child.

She reviewed the questionnaire with me and really took the time to LISTEN. We talked about previous illnesses, injuries, surgeries and how I felt in my body. I was treated like the expert - which had never happened before.

I left that appointment exhausted and stunned as it was the first time a doctor had worked so collaboratively with me. I was referred to genetics where I was finally given the diagnosis that put all the missing pieces together - EDS (Ehlers Danlos Syndrome).

The signs had been there for years - but no one ever slowed down and spoke to me long enough to realize it. No one was curious enough. No one asked me what it was like to be in MY body.

It seems so simple - yet it’s a skill many healthcare workers lack.

My ask of them tonight is to listen to your patient. Let them be partners in their care. Respect that while they may not have a medical degree - they are the experts in their own body and can help you if you let them.

Be curious. Always.

#curiousity #medicine #healthcare #misdiagnosis #gaslighting #believepatients #believewomen #chronicillness #zebra #EDS #ehlersdanlossyndrome #pots #mcas #DysautonomiaAwarenessMonth #Dysautonomia #ableism #disability #disabled #misogyny

When I was 16 I developed a foot infection that necessitated surgery.

It was done under local anesthesia - only the anesthetic didn’t work.

I screamed and begged them to stop - but I was held down and called “hysterical”. Told to “calm down” and that it was “all in my head.”

I was restrained, belittled and repeatedly told to quiet down. I was given a sedative that did absolutely nothing.

I remember leaving the hospital in tears - clutching the small handful of pain meds they had deigned to give me.

I began questioning myself. Maybe it didn’t hurt that much? Maybe I was just squeamish and overreacting?

After all - THEY were the experts and they all told me that there was absolutely “no way” I could feel the scalpel cutting me.

The foot became infected - and I had to go back for THREE revision surgeries. I was so young that I didn’t know HOW to advocate for myself. I didn’t understand I could request a different doctor. I hadn’t yet learned to trust my gut.

Every surgery was the same - with local anesthetic not working the way it should. Not ONCE did anyone stop to consider that maybe I was telling the truth. Or to ask WHY an otherwise healthy 16 year old was having so many complications.

It was a huge missed opportunity - diagnostically speaking. The lack of reaction to local anesthetic is a common feature of EDS - as is poor wound healing. The blood pooling and neuropathy were early signs of POTS. Both were missed because all they saw was a young female and assumed I was “hysterical.”

That infection ended up ruining an entire summer for me. I needed IV antibiotics and home nursing to come and pack and re-pack it. I was in a wheelchair for a month and crutches for almost 6 months after that.

Unfortunately - the experience took more than a summer away from me. It took my innocence. From what point onward I no longer believed that the hospital was a place to go to “better”. I didn’t trust healthcare workers the way I did before. I was guarded, traumatized and angry.

Decades later I would learn that the surgeon who operated lost her medical license after being caught not washing hands or sterilizing instruments before procedures.

She was PURPOSEFULLY negligent with multiple patients - but it took years for anything to be done about it.

How many others were hurt like me? Did she treat other minors? Disabled patients? Could I have done anything to stop her?

These questions haunt me to this day - because I suffered so much and it was completely preventable.

This isn’t a unique story. Patients are taught that doctors know best. The culture of medicine encourages silence. We are dissuaded from speaking up or questioning authority.

medical school tends to reward those who “fall in line”… you don’t get ahead by rocking the boat.

If you’re disabled or have complex chronic illness - odds are you’ve got at LEAST one horror story of your own. Probably far more than one.

We have to interact with the system more than our non disabled peers - and we’re often treated worse by default.

This experience was only the first of many. It wasn’t even the most damaging thing that I’ve been through.

It’s events like this that made be become an advocate. I’m so disgusted by how I’ve been treated that I refuse to be silent anymore.

Because it isn’t just about ME. This is a problem the world over - and disabled people are the canaries in the coal mine. We often get the worst of the medical mistreatment - but no one is immune.

We need to change the system to a more understanding and collaborative one.

Patients deserve to be partners in their care. They should be treated like the experts they are. We may not have a medical degree but no one knows our body better.

Listen to us. Believe us. Don’t intentionally cause harm. Wear a mask - show us you care about keeping us safe.

For more on the lessons I’ve learned over years of interacting with the healthcare system - I’ve written a five part guide designed to make the hospital experience easier on disabled and chronically ill people (and those who love them).

All the articles are in this round up I just posted today:

https://www.disabledginger.com/p/a-five-part-guide-to-accessing-healthcare

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #misogyny #negligence #donoharm #malpractice #hysteria #believepatients

It's been a month since I lost my voice (dysphonia). I am currently fighting, over the phone, wit a nurse for a referral to an ENT.

#Believepatients

When I was a teenager - my mom’s pancreatic cancer was misdiagnosed as “anxiety.” The experience shaped my view of the healthcare system & the damage that bias, gaslighting and psychologizing illnesses can cause.

Pancreatic cancer is among the most deadly cancers - and is almost always diagnosed too late. My mom had led a very healthy life with few medical setbacks until she suddenly presented with intense itching, bruising and some back pain.

She was literally black and blue from scratching and completely unable to stop because of its severity. So she went to the doctor.

The diagnosis? Anxiety.

I remember her coming home from the doctors and telling me they said she was just anxious because it was the start of a new school year (she was a teacher). I was livid on her behalf because I could see the severity of the bruises - this was clearly NOT anxiety.

This was before the internet and social media - so it was harder to research these things on your own or talk to other patients. Challenging doctors was fairly unheard of. So she continued on and we even put oven mitts on her hands at night to avoid damaging her skin.

A few weeks later she woke up jaundiced so we took her back to the doctor. He immediately ran labs and the results were so bad she was admitted to hospital for urgent testing.

They discovered a blockage in her bile duct which was causing the itching AND the jaundice. We could tell from the speed everyone was moving it was likely bad news - but tried to remain hopeful that perhaps it was something benign.

When the results came back that it was pancreatic cancer the whole family was shocked. Mom was only 47 with no major risk factors and in good health. How could she have terminal cancer?

She fought for 9 months before succumbing to cancer in 2001. During that time I learned - the hard way - how easily some doctors can dismiss patients with "anxiety". Especially women. I learned to be a fierce advocate for myself because of what happened to her.

It is troubling that something as serious as terminal pancreatic cancer was fluffed off because they saw a healthy, petite, slightly anxious middle aged woman. It never should have happened & caused a lot of trauma when the diagnosis was revealed. 1/2

#medicalgaslighting #gaslighting #misdiagnosis #trauma #disability #advocacy #cancer #believepatients #CovidIsNotOver #CovidIsAirborne #Ableism #PancreaticCancer

I see far too many chronic illness patients being dismissed from the ER for “faking”. Is there not a duty to run tests to ensure something isn’t missed before discharging someone as a fake? Given the consequences could literally be their life?

This happened to me years ago -
I had major OB GYN surgery and a week later was getting worse not better. Weak, in pain, swollen, loss of appetite etc. Went to the ER and was treated like a “nuisance” and asked what I “expected” after major surgery. I tried to explain I expected to improve a little each day - and I was clearly decompensating.

They decided I was faking and sent me home. This repeated 3 times over the course of a week - each time I was sent home without any tests.

Finally my then boyfriend took me in for a 4th time - literally carrying me to triage because I could no longer stand up. They got angry and said “we’ve already told her there’s nothing we can do.” He said he wasn’t taking me home to die. He demanded they run tests. The situation escalated but they finally acquiesced to the most basic blood work and an ultrasound. I’m incredibly fortunate they listened to him - and incredibly angry it took a man causing a scene to get me care.

Turns out I had a hugely elevated white blood count, a ferritin of zero and a hemoglobin of 63. I had a massive infected abscess in my abdomen that had been caused by an internal bleed left unchecked for weeks. I was rushed to emergency surgery and needed multiple rounds of blood transfusions and spent weeks in the hospital.

Had I gone home - I more than likely would have died. Had I been alone - I would have died. It should never be this way and from what I’m hearing from other patients it’s only gotten worse since Covid.

Please listen to your patients. We KNOW our bodies. Listen to women & marginalized individuals… don’t make us bring someone else to tell our story. Listen to people who come back over and over again - they clearly need help. Have some compassion and don’t assume someone is faking just because you don’t see an obvious issue.

#DisabilityRights #HealthcareisaHumanRight #advocacy #disability #womenshealth #believepatients #healthcare #chronicillness #spoonies #gaslighting #medicalgaslighting

"No one with any understanding of ME – and how decades of systemic gaslighting, prejudice, and negligence has affected people living with it – would even consider using the language Oxford NHS did."

More here:

https://www.thecanary.co/uk/2023/08/23/oxford-nhs-me-job-advert-response/

#MECFS #ChronicIllness #Disabilty #BelievePatients

At a recent outside (#CovidIsAirborne #CovidIsNotOver) family gathering, which despite pacing and restrictions regarding location and time I spent I still haven't recovered from, when my #LongCovid did come up (which doesn't happen often) the word "tired" was mostly used. "Oh, you get tired from things like this", " I hope you didn't feel too tired from it". After facing gaslighting from people close to me these last 3 years of having Long-Covid - especially when there wasn't even a term for it and how this relates to widespread, dangerous gaslighting and 'treatment' for people with ME/CFS - I felt agitated and angry, with my experiences and identity minimised/ignored. I do feel I need to do more to challenge when people close to me do this whilst not taking up too many spoons.

Relating to this, it felt cathartic and reaffirming to read this article (paywall bypassing link below) and be like, yes that's what it's like, that's how I have felt for so long now. Definitely recommend reading (as a note, the article is quite long - I needed several pacing breaks to finish it but it was worth it):

https://archive.ph/yFpFc

#MECFS #PEM #BelievePatients #ChronicIllness #Spoons #Disability #SpoonTheory