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

How to be an Effective Advocate for a Disabled Patient

Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency and control in a hospital environment. Having an effective advocate can vastly improve the experience.

^{Broadwaybabyto (The Disabled Ginger)}

Have you ever had a healthcare worker get angry with you for protecting yourself? Have you detected a critical error and had them argue or tell you you’re wrong?

I had a terrifying experience this week where one of my homecare nurses tried to administer insulin. I’m NOT a diabetic. I’m on nursing services for blood pressure checks and IV saline because I’m dangerously hypotensive.

I told them “I think you have the wrong patient I’m not on insulin” and they became very upset. They tried to force it on me and told me my file would be noted as “noncompliance” and I might lose the homecare services.

I held my ground and asked them to double check the file as they clearly had me mixed up with another patient.

They finally did - albeit through sighs and eyerolls. They didn’t apologize - they just left and said the next nurse could deal with my issues.

This js terrifying. Many people on homecare are elderly and/or not mentally competent and can’t always check and double check what they’re being given. What if I had been extra woozy or had passed out before they arrived? What happens if you administer insulin to someone on alot of meds and not diabetic?

More importantly - WHY are we not trusted to know our own bodies? Women, disabled people, marginalized individuals… it’s almost always the same experience. We’re told we’re wrong and threatened with loss of care, non compliance, psych holds or worse.

Is the fact that I demand they wear a respirator before entering playing a role? Could it be that they’re overworked and frequently sick because of unmitigated COVID spread?

We need masks and clean air in healthcare NOW. We can’t keep infecting and reinfecting healthcare workers and expecting that there won’t be consequences.

We absolutely shouldn’t be infecting high risk patients who are relying on them for life saving care.

If you’re a HCW who stopped masking - please start again. For your health and the health of your patients.

If a patient tells you a certain medication or procedure will be harmful - listen to them. We know our bodies & deserve to be respected.

I may write an essay about this experience when I’m less exhausted and angry. In the meantime you can read one of my other examples of medical gaslighting & misogyny … one which very nearly cost me my life:

https://www.disabledginger.com/p/my-most-dangerous-er-experience-and

#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

Disabled and high risk people aren’t safe anywhere because of people & stories like this one.

Even those who know & love someone vulnerable refuse to take precautions.

They don’t isolate or mask when they’re sick. They’re knowingly exposing vulnerable people and don’t care.

Perhaps the most frustrating part is that sometimes - in a very blue moon - a person will recognize and be grateful they didn’t expose YOU. If it’s someone who knows and loves you they will express relief that they didn’t get you sick.

But they can’t extend that compassion to anyone else in society. They act as if YOU are the only vulnerable person in the world.

https://www.disabledginger.com/p/covid-4-years-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 #MaskBans #NoMaskBans #bullying #CleanAirClassrooms #UglyLaws

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

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

Tess Finch-Lees: If parents don’t fight to protect children from Covid in schools, nobody else will

“It’s not your fault,” I told 16-year-old Cara, whose mother died of a SARS-CoV-2 infection she gave her.

^{Tess Finch-Lees (Irish Independent)}

Since sharing my story about my medically necessary hysterectomy at 24… I’ve been told I’m an inadequate woman, my illness was my fault because I neglected my duty to procreate, that I’m scaring other women away FROM procreating and a failure.

One person called me a dried up bitter wench whose uterus “crapped out” when I got old because I didn’t have children. Meanwhile I was diagnosed infertile at 19… I would hardly call that old! I was told I couldn’t survive pregnancy at 21… and then the hysterectomy was a medical emergency at 24. Yet still - I’m blamed.

I know there will always be trolls - but believe me I’ve heard all this (and worse) in real life. I learned within about 3 months of surgery to never speak of it because of how poorly I was treated. It impacted my dating life, healthcare (so many pregnancy tests and accusations of being “confused” about what surgery I had) and caused significant medical PTSD that to this day makes it hard for me to access healthcare.

Please tell me again how women aren’t seen as incubators? How there’s no misogyny? Because if you say these things flippantly to women who are finally speaking out about their experiences - that’s 100% the message you’re sending.

I don’t say this for sympathy - I say it more to hold myself accountable. To remind myself that I had every right to tell my story … and that this type of negativity is the reason it took me twenty years to share it. That’s twenty years that my experiences may have potentially helped another young person going through a similar situation.

We can’t be scared into silence. There will always be people who see those of us without children and/or without a womb as “less than”… but they’re wrong. The best way to change the perception of childless people is to keep speaking out and challenging these ridiculous viewpoints. So I’m going to keep speaking out - and I will encourage others to do the same. I welcome them to tell their own story of reproductive health challenges on any of my posts, on my website or in a DM. I’m happy to listen, encourage and support where I can.

As an aside - this attitude exists in healthcare too where it does WAY more damage. From 16-19 I was repeatedly told I should get pregnant and that might “fix” my painful periods. 19-21 I was told that I was likely infertile and that I should start preparing for difficulties finding a husband. 21-24 I spent begging them to give me a hysterectomy because my quality of life had vanished - I was bedridden most of the time.

I was always told no - and usually because I might want children, meet a man who wants children and/or feel differently once I was “in love”.

They had told me that pregnancy would more than likely be impossible and/or KILL me … yet apparently once I was “in love” I would want to give it the ol college try anyways.

The medical establishment failed me - like they fail so many people who need reproductive healthcare. They waited until I was bleeding out to perform the hysterectomy, left me with severe post operative complications and neglected to handle them properly as well.

My sincere hope is that NO one has to go through what i went through - yet I know that people go through it every single day. Some don’t live to tell their stories. So I will keep telling mine in the hopes of gaining more allies who can help us fight for better healthcare.

I wrote two articles on this topic for anyone who wants to read more in depth. The first one chronicles my journey up to the emergency hysterectomy: https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but

The second one covers the post operative complication and the severe gaslighting and neglect that nearly cost me my life: https://www.disabledginger.com/p/my-most-dangerous-er-experience-and

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

Pregnancy Will Likely Kill You but You May Want Babies!

A look at misogyny in medicine, bodily autonomy, infertility and the struggles women face with not being trusted to make decisions for their own body.

^{Broadwaybabyto (The Disabled Ginger)}

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