#dysautonomiaawarenessmonth — Public Fediverse posts

Hm. Kinda small, but promising
https://pmc.ncbi.nlm.nih.gov/articles/PMC10498998/
A Stellate Ganglion Block seems to help 86% of a 41 patient study on Long Covid. (Or maybe the study is 41 patients and only some of them have Long Covid? I'm preserving spoons.)

#LongCovid #PostCovid #PostCovidSyndrome #MECFS #ME #CFS #PostViral #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ProlongedSymptoms #Dysautonomia #DysautonomiaAwarenessMonth

Hm. Kinda small, but promising
https://pmc.ncbi.nlm.nih.gov/articles/PMC10498998/
A Stellate Ganglion Block seems to help 86% of a 41 patient study on Long Covid. (Or maybe the study is 41 patients and only some of them have Long Covid? I'm preserving spoons.)

#LongCovid #PostCovid #PostCovidSyndrome #MECFS #ME #CFS #PostViral #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ProlongedSymptoms #Dysautonomia #DysautonomiaAwarenessMonth

Hm. Kinda small, but promising
https://pmc.ncbi.nlm.nih.gov/articles/PMC10498998/
A Stellate Ganglion Block seems to help 86% of a 41 patient study on Long Covid. (Or maybe the study is 41 patients and only some of them have Long Covid? I'm preserving spoons.)

#LongCovid #PostCovid #PostCovidSyndrome #MECFS #ME #CFS #PostViral #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ProlongedSymptoms #Dysautonomia #DysautonomiaAwarenessMonth

Hm. Kinda small, but promising
https://pmc.ncbi.nlm.nih.gov/articles/PMC10498998/
A Stellate Ganglion Block seems to help 86% of a 41 patient study on Long Covid. (Or maybe the study is 41 patients and only some of them have Long Covid? I'm preserving spoons.)

#LongCovid #PostCovid #PostCovidSyndrome #MECFS #ME #CFS #PostViral #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ProlongedSymptoms #Dysautonomia #DysautonomiaAwarenessMonth

Hm. Kinda small, but promising
https://pmc.ncbi.nlm.nih.gov/articles/PMC10498998/
A Stellate Ganglion Block seems to help 86% of a 41 patient study on Long Covid. (Or maybe the study is 41 patients and only some of them have Long Covid? I'm preserving spoons.)

#LongCovid #PostCovid #PostCovidSyndrome #MECFS #ME #CFS #PostViral #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ProlongedSymptoms #Dysautonomia #DysautonomiaAwarenessMonth

From ME Research UK:

Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. https://tinyurl.com/3f5sxbza

#longcovid @longcovid @mecfs @pots

Here is Part Two in my Series on POTS and Dysautonomia! This post focuses on the LONG road to diagnosis - and the gaslighting and barriers patients face along the way. The accusations of anxiety, the minimization of symptoms and of course the dreaded 'it's all in your head'.

I lost track of how many doctors worked me up - saw my very serious physical symptoms - and still said "What do you want ME to do about it?"

The answer was obvious - I wanted them to do their job. I needed them to think outside the box. To believe me when I said I wasn't anxious. To recognize that 'anxiety' isn't postural in nature. To figure out what was wrong.

It took years to get my diagnosis - and I hope my articles can help patients avoid some of the pitfalls and traps I fell in to. I want healthcare workers to read these posts and consider POTS the next time a patient comes in with unexplained symptoms like dizziness, tachycardia, fatigue and fainting.

There is hope. Things can and do get better. You learn how to manage symptoms, minimize setbacks and adapt to living life horizontally!

https://www.disabledginger.com/p/its-just-anxiety-or-perhaps-theyve

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 #gaslighting #misdiagnosis #dysautonomiaawarenessmonth

Someone emailed me and told they took my Intro to POTS/Dysautonomia article to their doctor - and now their doctor is taking them seriously and exploring it as a diagnosis!

I’m genuinely over the moon. When I started The Disabled Ginger my hope was to empower patients to learn as much as they can about their conditions, accept their disabilities and start accommodating them, and also to help educate healthcare workers.

I try and make my articles accessible for patients and their loved ones as well as medical professionals who might be willing to read them.

Conditions like POTS are barely touched on in medical school and often misdiagnosed. Doctors don’t know what to look for and/or aren’t listening to their patients.

If my articles can help bridge that gap - it makes all the work and exhaustion so worth it.

I’m hoping to have Part Two: “Maybe it’s Anxiety - Maybe You’re Misdiagnosed” done this week… and it will cover the long road to diagnosis as well as my story about HOW I finally figured out I had POTS.

If you missed the first article - Living Life Upside Down - it’s here:

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#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 #DysautonomiaAwarenessMonth

It’s POTS Awareness Day. I forgot because (ironically) I’m dealing with monster coat hanger pain… something common in POTS.

It’s a terrible headache that encompasses your neck and upper back - it basically forms the shape of a coat hanger!

It took me years to realize the coat hanger pain was from my POTS. Years of suffering through debilitating headaches and back pain that painkillers couldn’t touch.

I tried massage, heat, ice, stretches, laying in a dark room…
Nothing worked.

You know what DID work? IV saline. When I get IV fluids I can feel the pain start to melt away. Relief tends to start at the top of my head and slowly moves down to my shoulders and back - the pain is generally gone after 1-2L.

It’s incredible just how much your body can be impacted by POTS. I’ve been dealing with this condition for years and I’m still learning new things every day.

It’s also a common comorbid with Long Covid. If you’re new to POTS, think you might have POTS or just want to learn more - I wrote an intro guide linked below:

https://www.disabledginger.com/p/living-life-upside-down-an-intro

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 #DysautonomiaAwarenessMonth #POTSAwarenessDay

It’s POTS Awareness Day. I forgot because (ironically) I’m dealing with monster coat hanger pain… something common in POTS.

It’s a terrible headache that encompasses your neck and upper back - it basically forms the shape of a coat hanger!

It took me years to realize the coat hanger pain was from my POTS. Years of suffering through debilitating headaches and back pain that painkillers couldn’t touch.

I tried massage, heat, ice, stretches, laying in a dark room…
Nothing worked.

You know what DID work? IV saline. When I get IV fluids I can feel the pain start to melt away. Relief tends to start at the top of my head and slowly moves down to my shoulders and back - the pain is generally gone after 1-2L.

It’s incredible just how much your body can be impacted by POTS. I’ve been dealing with this condition for years and I’m still learning new things every day.

It’s also a common comorbid with Long Covid. If you’re new to POTS, think you might have POTS or just want to learn more - I wrote an intro guide linked below:

https://www.disabledginger.com/p/living-life-upside-down-an-intro

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 #DysautonomiaAwarenessMonth #POTSAwarenessDay

It’s POTS Awareness Day. I forgot because (ironically) I’m dealing with monster coat hanger pain… something common in POTS.

It’s a terrible headache that encompasses your neck and upper back - it basically forms the shape of a coat hanger!

It took me years to realize the coat hanger pain was from my POTS. Years of suffering through debilitating headaches and back pain that painkillers couldn’t touch.

I tried massage, heat, ice, stretches, laying in a dark room…
Nothing worked.

You know what DID work? IV saline. When I get IV fluids I can feel the pain start to melt away. Relief tends to start at the top of my head and slowly moves down to my shoulders and back - the pain is generally gone after 1-2L.

It’s incredible just how much your body can be impacted by POTS. I’ve been dealing with this condition for years and I’m still learning new things every day.

It’s also a common comorbid with Long Covid. If you’re new to POTS, think you might have POTS or just want to learn more - I wrote an intro guide linked below:

https://www.disabledginger.com/p/living-life-upside-down-an-intro

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 #DysautonomiaAwarenessMonth #POTSAwarenessDay

It’s POTS Awareness Day. I forgot because (ironically) I’m dealing with monster coat hanger pain… something common in POTS.

It’s a terrible headache that encompasses your neck and upper back - it basically forms the shape of a coat hanger!

It took me years to realize the coat hanger pain was from my POTS. Years of suffering through debilitating headaches and back pain that painkillers couldn’t touch.

I tried massage, heat, ice, stretches, laying in a dark room…
Nothing worked.

You know what DID work? IV saline. When I get IV fluids I can feel the pain start to melt away. Relief tends to start at the top of my head and slowly moves down to my shoulders and back - the pain is generally gone after 1-2L.

It’s incredible just how much your body can be impacted by POTS. I’ve been dealing with this condition for years and I’m still learning new things every day.

It’s also a common comorbid with Long Covid. If you’re new to POTS, think you might have POTS or just want to learn more - I wrote an intro guide linked below:

https://www.disabledginger.com/p/living-life-upside-down-an-intro

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 #DysautonomiaAwarenessMonth #POTSAwarenessDay

It’s POTS Awareness Day. I forgot because (ironically) I’m dealing with monster coat hanger pain… something common in POTS.

It’s a terrible headache that encompasses your neck and upper back - it basically forms the shape of a coat hanger!

It took me years to realize the coat hanger pain was from my POTS. Years of suffering through debilitating headaches and back pain that painkillers couldn’t touch.

I tried massage, heat, ice, stretches, laying in a dark room…
Nothing worked.

You know what DID work? IV saline. When I get IV fluids I can feel the pain start to melt away. Relief tends to start at the top of my head and slowly moves down to my shoulders and back - the pain is generally gone after 1-2L.

It’s incredible just how much your body can be impacted by POTS. I’ve been dealing with this condition for years and I’m still learning new things every day.

It’s also a common comorbid with Long Covid. If you’re new to POTS, think you might have POTS or just want to learn more - I wrote an intro guide linked below:

https://www.disabledginger.com/p/living-life-upside-down-an-intro

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 #DysautonomiaAwarenessMonth #POTSAwarenessDay

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials. #PoTSAwarenessDay @DysSupport

@ukpots

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials. #PoTSAwarenessDay @DysSupport

@ukpots

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials. #PoTSAwarenessDay @DysSupport

@ukpots

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials. #PoTSAwarenessDay @DysSupport

@ukpots

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials. #PoTSAwarenessDay @DysSupport

@ukpots

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials.
💜More details: https://potsuk.org/wp-content/uploads/2024/09/PoTS-Pledge-1.pdf
#PoTSAwarenessDay @DysSupport

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials.
💜More details: https://potsuk.org/wp-content/uploads/2024/09/PoTS-Pledge-1.pdf
#PoTSAwarenessDay @DysSupport

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials.
💜More details: https://potsuk.org/wp-content/uploads/2024/09/PoTS-Pledge-1.pdf
#PoTSAwarenessDay @DysSupport

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials.
💜More details: https://potsuk.org/wp-content/uploads/2024/09/PoTS-Pledge-1.pdf
#PoTSAwarenessDay @DysSupport

💜Make a pledge to raise awareness of #PoTS throughout October #DysautonomiaAwarenessMonth
1) Share or take action with @UKPoTs daily posts/ideas.
2) Pledge an activity you enjoy and explain on your socials.
💜More details: https://potsuk.org/wp-content/uploads/2024/09/PoTS-Pledge-1.pdf
#PoTSAwarenessDay @DysSupport

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

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#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 #mastcells #DysautonomiaAwarenessMonth

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#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 #mastcells #DysautonomiaAwarenessMonth

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#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 #mastcells #DysautonomiaAwarenessMonth

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#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 #mastcells #DysautonomiaAwarenessMonth

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#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 #mastcells #DysautonomiaAwarenessMonth

Today marks the start of #DysautonomiaAwarenessMonth = disorders of the autonomic nervous system, including #PoTS 💜

Triggers: viruses, bacterial infection, pregnancy, surgery, a traumatic event, immunisation.

Common co-morbidities: #LongCovid,
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (#MECFS),
Ehlers-Danlos Syndrome (#EDS),
Mast Cell Activation Syndrome (#MCAS).

Please take the time to learn more on our website: http://potsuk.org