By K W Warburton, The Reluctant Spoonie
Why are POTS advocates vital? The average diagnosis timescale for Postural Orthostatic Tachycardia Syndrome (POTS) is approximately 6 years. Certainly, 6 Years is a long time to wait for a diagnosis which is why online advocacy work is vital.
POTS is a common form of dysautonomia. It is a very debilitating condition which leaves 25% of those who have it unable to work or study (Grubb, 2008). Additionally, 90% of people with POTS are female which may be another barrier to a quick diagnosis.
Although POTS is thought to affect millions of people worldwide, it is not commonly diagnosed. Moreover, it is often misdiagnosed as another condition such as anxiety. Therefore, it is important to raise awareness of the condition during Dysautonomia Awareness Month (October) and throughout the year.
Get our Guide to Living with POTS here
Here are my five favourite POTS advocates and why I think you should be following them as well.
1. Jessica Kellgren-Fozard
Jessica is a YouTuber with Hereditary Neuropathy with liability to Pressure Palsies (HNPP), mixed connective tissue disorder (MCTD) and POTS. Jessica makes entertaining and lighthearted videos about the realities of living with multiple chronic illnesses which often feature her wife and two dogs.
“Adding vintage lesbian fabulousness to a life with disabilities and chronic illnesses, aided by my beautiful wife Claudia and our adorable pups. I make fun, uplifting and educational content that should help you get through tough times and not feel alone.”
Follow Jessica on Instagram here
2. Rhi (@spooniestudent)
Rhi is a chronically ill student with POTS and other chronic conditions. She uses her Instagram account to raise awareness of living with POTS.
“I’m a chronically ill student and I use my account to bring awareness to the various conditions I have. I try to show the highs and lows of life being chronically ill. I’m also documenting my journey of completing my Master’s degree in an attempt to show how studying can impact chronically ill and disabled individuals. I also discuss how my culture (Indian) can impact my life whilst being unwell too, again, bring awareness to another layer of struggles people like myself face.”-Rhi @spooniestudent
Rhi wrote a piece for issue 1 of our digital mag. Read it here.
3. Georgina (Georgina’s Journey)
Georgina is a YouTuber who makes videos on the realities of living with POTS and other chronic illnesses. Her videos show the unfiltered reality of living with multiple chronic illnesses. In addition to how she manages her conditions around her university studies.
“Hi, I’m Georgina! I have POTS, EDS/HSD & a few other comorbidities that have all come with their own life changes & challenges! But I’m finally getting the hang of managing everything & love sharing all the tips & lessons I learn along the way on my YouTube channel ‘Georgina’s Journey’ & on my Instagram account”
Follow Georgina on Instagram here
4. Natasha Lipman
Natasha is a Jewish chronic illness blogger who also works for the BBC. Natasha writes about her experiences living with EDS, POTS, PMDD and M.E. She is about to start a new series on her blog about pacing and exercise along with a new podcast (who here remembers Spoonie Pyjama Party?).
“Here you’ll find what is, essentially, a collection of the type of content that I wish I’d seen when I was first diagnosed when I desperately needed to know that chronic illness didn’t mean that my life was over.”Natasha Lipman, http://natashalipman.com/about-me/
Check out her blog here
5. Charli Clement
Charli is a disabled activist and blogger with Hypermobility Spectrum Disorder and POTS along with autism, dyspraxia and anxiety. She aims to bring more awareness to these conditions as well as writing about other topics including asexuality, education, politics and volunteering. In 2019, she became a national #iwill Campaign Ambassador for her work.
Check out Charli’s blog posts about POTS here:
Follow Charli on Instagram here
Who are you favourite dysautonomia/ POTS advocates?