Me (in ER for issue unrelated to throat/mouth): “I would prefer not to remove my N95.”

Dr: “You’re not dictating care. I’m in charge. If you don’t like it you can leave.”

Me: “I’m extremely high risk - please let me keep it on.”

Dr: *sigh* “You’re not going to get Covid HERE”

I resent the “you’re not dictating care” line. It’s MY body. I should get SOME say in what happens to it.

I wasn’t self diagnosing or telling them how to do their job - I just wanted to keep my necessary PPE.

I would understand if examining my mouth, nose or throat was relevant to the emergency I was having - but it wasn’t. This felt like a “test” to see how compliant I would be - and it’s not right to test patients and expose them to a deadly and disabling virus.

I also loathe the emphasis on the word “here”. It’s not the first time I’ve heard it in the hospital either. Many HCWs act like the idea you might catch Covid in their care is absurd.

I feel like it should go without saying that it is NOT absurd. Hospitals and schools are consistently the places that drive community spread. The ER is arguably the highest risk setting because it’s crowded, you’re there for a LONG time and people with covid will go there if they need care. To suggest it’s impossible to catch covid there is to basically show you’re completely detached from reality.

I asked them to check my chart to see how clinically vulnerable I am (they skimmed it). I asked if there was any diagnostic reason I needed to remove my respirator (they scoffed and provided no answer). I declined.

At this point the energy in the room shifted. I was there for a cardiac emergency and up until then had been taken quite seriously. It changed on a dime. I finally asked if I could speak to the charge nurse or get a cardiology consult called down as I didn’t feel my issues were being properly addressed.

I was told “if you’re unhappy with the care you can avail yourself of MAiD”

For those not in Canada - that’s our medical assistance in death program.

To be clear - I don’t think this doctor was actually suggesting I end my life. I think they were just pissed off and trying to hurt me. That said it’s wildly inappropriate to EVER say that to a patient - and I hate that I didn’t have an advocate with me to witness that atrocity.

I ended up leaving and going to a different hospital where I was diagnosed with a serious issue - and I didn’t have to remove my respirator for them to figure it out.

Encounters like this are why I say you should always have an advocate when you’re in the hospital. It shouldn’t be necessary - it’s appalling that it is - but we have to play the hand we’re dealt.

I did lodge a complaint but as of now nothing has come of it - and based on past experience I doubt anything will.

I did wrote a guide on how to be a good advocate for a disabled patient - and it also includes what to do when you don’t have one. Though this story proves that sometimes even if you do everything “right”… you still receive horrible care. It’s one of the reasons I tell my stories and advocate for patients - I want to change things so that no one is ever treated the way I’ve been treated.

https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for

#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 #keepmasksinhealthcar

I read a beautiful article today from someone who was effectively “coming out” as chronically ill. She spoke of the struggles of admitting to the world that she was sick - of putting it in writing for everyone to see.

It says a lot about our society that people are so afraid to admit they’re disabled or chronically ill - but I get it. I fought the label for SO long. My illnesses are invisible - so I could generally hide how sick I was from other people.

Until I couldn’t. Hiding your true and authentic self takes a toll. Pushing through the pain, plastering a smile on your face and ignoring what your body is crying out for? It never ends well.

It’s a big part of why I started The Disabled Ginger. My hope is by sharing my stories and struggles - by being loud, vulnerable and honest about my disabilities - I can help others arrive at a place of acceptance faster than I did.

There was something else in her piece that’s been niggling at me though - which is that we share the same diseases and we were both diagnosed before they became “trendy” on social media. As a result - we have fewer barriers to care than younger women who are trying to get a diagnosis now.

This fact makes me livid. We should ALL be livid. We owe a debt of gratitude to the content creators who are making videos and art about these rare but not so rare chronic illnesses. If not for them many women would never figure out what’s happening in their own bodies.

The average length of time to a POTS diagnosis for a female patient is SEVEN years. Please read that again. Seven years.

That’s years of suffering with debilitating fatigue, tachycardia, gastrointestinal issues, fainting and more. Years of being told you’re “just anxious” or worse - a hysterical woman.

The people making videos and talking about these conditions are arming young women with valuable knowledge they can use to (hopefully) get diagnosed faster. Early diagnosis is key to avoiding worsening symptoms and setbacks. I had so many injuries from fainting - some permanent. How many could have been avoided had I know what was wrong with me sooner?

I so appreciate the author for writing such a vulnerable piece about coming to terms with being chronically ill. It’s a hard thing to do. Taking that brave step of putting it out into the world - of admitting to everyone that you’re disabled - takes courage. We should support the heck out of people when they do it.

Also I agree with her rallying cry - don’t feel sorry for us. Feel livid. Livid at the time it takes to be diagnosed. At how few treatments there are. At how much misogyny, discrimination and ableism we have to endure.

Get loud. Get angry. Let’s change things.

Article here: https://meandorla.substack.com/p/something-i-need-to-tell-you

My website The Disabled Ginger is here: https://www.disabledginger.com/

#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

Another day - another friend testing positive for Covid. Sicker than the last time (so much for herd immunity eh?)

There was a small glimmer of hope when they admitted that they had become really lax on precautions and were sick and tired of being sick and tired.

When someone says this to you - do you take the opportunity to gently encourage them to resume masking? I try and re-affirm how effective a good quality respirator is - as well as nasal sprays and mouth washes for an extra layer.

What I’ve noticed though is that people seem really interested in mitigations when they’re acutely ill… and may even mask for a few weeks after… but then the peer pressure to eat indoors, go without the mask and “get back to normal” always wins out. Until the next time they get sick. Rinse and repeat.

It’s heartbreaking to watch since we know each covid infection is a roll of the dice with respect to ending up disabled by Long Covid - and we don’t fully know the long term effects of multiple infections. What we DO know isn’t encouraging.

How can we convince people to not only re-start mitigations - but not give up on them? How can we keep them from retreating into the denial bubble so many are firmly stuck in?

#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

I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’

I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.

I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.

I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.

I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.

When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.

When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.

In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.

My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for

#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 #MaskBans #NoMaskBans #bullying #CleanAirClassrooms

Austrian woman convicted of negligent homicide after infecting her neighbour with COVID (they died).

The woman had tested positive & told her doctor she wouldn’t isolate.

I always ask if people would change behaviour if they had to face a person they killed…is this a no? It was her second offence.

I worry people can’t conceive that THEY are responsible for someone’s death or disability. They just blame the virus. When the virus only caused harmed because someone infected another person. This woman could have isolated. She could have worn a mask. She knowingly went out while infectious and positive … and someone died.

Does anyone know if any other countries have pursued similar cases? I was genuinely shocked to see this - but I think it needs to happen. People need to be held accountable.

https://www.thecanadianpressnews.ca/health/austrian-woman-is-found-guilty-of-fatally-infecting-her-neighbor-with-covid-19/article_90e041c1-c362-5eec-90d3-f21d4c33cc0f.html

#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 #MaskBans #NoMaskBans #bullying #CleanAirClassrooms #UglyLaws

Publication in Norway actually printed that more young people are dying of illness and that scientists fear covid is the reason.

It’s about time this made headlines - and I sincerely hope people are paying attention.

Cumulative infections are doing untold amounts of damage. They increase your risk of Long Covid - but it’s also a vascular virus which means you could be a at risk for clots, heart attacks, strokes and more.

We need to start mitigating before it’s too late. We don’t know what will happen in 5 or 10 more years. We don’t yet know what the true long term effects of repeat infections will be.

What we DO know is pretty scary. Why aren’t we applying the precautionary principle? Why aren’t we willing to be humble and admit this is a novel virus that we shouldn’t be treating as though it were “nothing.”?

Mask up. Clean the air. Test. Isolate. It’s not that hard. And demand more from your government and public health authorities.

Link to full article here: https://www.nrk.no/buskerud/flere-unge-dode-av-sykdom_-forskere-slar-alarm-1.16926584

#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 #MaskBans #NoMaskBans

Cara was bullied for masking at school and eventually stopped… only to infect her high risk mom with covid. Her mom died.

Governments & public health should be blamed for this - not Cara. But I’m sure she will feel guilt the rest of her life. This is where “you do you” leads.

It shouldn’t be up to kids to protect their high risk family members. They aren’t prepared for the amount of bullying and peer pressure they will face to de-mask. We need to be dealing with this at the institution level. Clean air in classrooms. Paid time off for sick teachers and staff. No more attendance awareness and punishing sick kids for staying home. No more “diarrhea scales” to indicate whether your child can come to school with Covid diarrhea (your kid should be home if they have diarrhea). Negative tests should be required to return to the classroom.

I lost my mom to cancer when I was 19… and it fundamentally altered my entire life. Losing your Mom at a young age is a dreadful experience - and I can’t even imagine the grief and guilt this young girl is facing.

Her life is going to be forever altered. I hope she’s wrapped up in a cocoon of support and love and that it’s made clear to her every day that she was failed by systems and institutions. We must do better. The grown ups and those in charge NEED to protect the kids so no child is ever in this position.

Lastly - don’t bully a kid who’s masking. It’s hard enough for them and you don’t know who they’re trying to protect. Leave them be or better yet - put on a mask yourself and show them some support and solidarity.

https://www.independent.ie/opinion/comment/tess-finch-lees-if-parents-dont-fight-to-protect-children-from-covid-in-schools-nobody-else-will/a1357930715.html

#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 #MaskBans #NoMaskBans #CleanAirClassrooms #CleanTheAir #Bullying

When I was 21…I was told I was likely infertile and that pregnancy could and probably would kill me. I was denied a tubal ligation and/or hysterectomy because I “might meet a man who wants kids”.

It was a horrifying look at how deep misogyny runs in medicine - and how little women are trusted to know their own bodies and make decisions for their health.

I eventually had the hysterectomy- but only once it became an emergency because I was bleeding to death and they couldn’t stop it. The surgery was more traumatizing and dangerous because I wasn’t afforded the time to adequately prep.

I’m grateful to have survived - and sharing my story in the hopes it helps other women feel less alone. I hope it challenges doctors and healthcare workers to think differently about how they treat women and realize that not ALL of us can become mothers (and not all of us WANT to either).

At the end of the day - a man wouldn’t have had these issues if he wanted a vasectomy. He would have been trusted to know his body. He wouldn’t have been treated like an incubator and I sincerely doubt many men are asked whether they’ve considered that they could meet their “dream woman” and she might be angry about their sterility.

There’s no stigma about the childless cat man.

https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #chronicillness #keepmasksinhealthcare #endometriosis #abortion #womenshealth #reproductiverights #gynecology #misogyny #infertility #childlesscatlady #bodilyautonomy