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Common Questions I Get Asked on POTs: Dysautonomia Awareness Month

Last year for Dysautonomia Awareness Month I shared my story of medical gas-lighting and struggles to diagnosis for one of my chronic conditions Postural Orthostatic Tachychardia Syndrome. It was a post that was tough to share, but something I was very proud to share. 

As there aren’t many easily shareable info-graphics on POTs, last year I decided to make my own because I would have appreciated these types of graphics to share with my friends and family when I was first diagnosed.

And considering the number of saves and shares on my POTS/Dysautonomia Infographic on Instagram and Pinterest last year, I decided to make three more to help raise further awareness. 

But this year I thought I would create these graphics around common questions I get asked on my Instagram: @findyourownhope.

What is Dysautonomia VS POTs?

Dysautonomia is a dysfunction of the nerves that regulate non-voluntary body functions, such as heart rate, blood pressure and sweating. Whereas POTs is a type of Dysautonomia.

What are the symptoms of POTs/Dysautonomia?

This is one of the most common questions I get in my direct messages on Instagram: “I think I may have POTs or dysautonomia, what are the symptoms?”

So to help answer this question I have made info-graphic dedicated to the frequent symptoms of POTs and dysautonomia.

How does POTs impact me?

Following on from what are the symptoms of the condition, another question I get asked is how does it affect me. Obviously, POTs and dysautonomia impacts everyone differently. When I was at my worst I was bed-bound, forced to drop out of university and work. This is not uncommon with a study finding 25% of POTs patients to be so disabled they cannot work or attend school.

Another study found that over 80% of these patients had to cut back or cease doing things they enjoyed (Read more here). 

Research has also shown that quality of life in POTs patients is similar to what is seen in congestive heart failure, or chronic obstructive pulmonary disease.

Is POTs rare?

Despite the fact that POTs is as common as well-known diseases like Parkinson’s and Multiple Sclerosis, POTs is often misdiagnosed and dismissed due to a severe lack of awareness. It breaks my heart thinking that I went undiagnosed for 14 years because most doctors were uninformed. 

As I said in my post last year

I am sick of medical professionals not understanding my condition, actually scratch that… I am sick of medical professionals not even knowing what my condition is. I am sick of having to explain it, and then justify it.” 

If it’s not rare – why is getting a diagnosis so hard?

Unfortunately little is done to inform doctors about POTs and dysautonomia. I have on many occasions had to explain what my condition is because doctors aren’t even aware of it or how my medications work.

I have been called “lazy” by doctors for only studying part-time at university. I have been told “it is all in my head” and unfortunately stories like this are all too common.

Several studies have found that 75% of POTs patients were told their symptoms were psychological and these “numbers were echoed by a study of 779 patients in the UK: 48% were told they had a psychiatric disorder or were hypochondriacs” (Read more about the study here).

These hurtful comments are not an attack on me or other dysautonomia sufferers but a reflection of the lack of some doctors understanding. Doctors who specialise in POTs know their stuff, so don’t be disheartened, there are good doctors out there who will understand you, your condition and be up to date with research.

HOW do you get POTs and WHO’S at risk? 

I first experienced POTs symptoms at the very young age of 4, it progressively got worse over time but for me wasn’t triggered by a specific infection. However, about 1/2 of patients do develop POTs after an infection, even COVID19.

Also, the vast majority of POTs patients are female, with a study finding 90% of POTs patients to be female and aged between 12 and 50. 

Thanks so much for your time and for reading this post! My birthday is also in October so I have decided to do a birthday fundraiser to raise money and awareness for Dysautonomia International and Invisi-Youth. If you would like to donate you can check out the link: here.

Find Your Own Hope

Welcome to my little corner of the internet where I share my journey of finding hope and enjoying life's simple pleasures. Find out more about me...

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7 COMMENTS

  • Kate

    This is such a good overview! As a fellow POTS patient, I super appreciate it. When I was diagnosed in 2017, I was told that it was rare, but I knew too many people with it for that to be true.

  • Kadie

    This is a wonderful post and great infographics! I am in the process of trying to get a diagnosis for POTs, while multiple doctors I have talked to think I have it none will commit to a diagnosis saying that they have heard of it, it sounds like the symptoms I have, but that they don’t know enough about it to diagnose me. It’s endlessly frustrating!

  • Cris Santos

    Hi darling, this post is so important! Thank you so much for educating us. Have a wonderful day. Cris

    http://www.photosbycris.com.au/?p=10104

  • Mica

    It’s so good you can raise awareness by sharing your story, it’s sad there is so little support out there and it’s difficult for people to get diagnosed.

    have a happy birthday and good luck with your fundraiser!

    Hope that you are having a good week! It’s a pretty stormy one here but the rain is very welcome 🙂

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