Emilie's 10-year journey to a PoTS diagnosis

PoTS is due to an abnormal response by the autonomic (automatic) nervous system. It is characterised as orthostatic intolerance – the development of symptoms when upright that are mostly relieved when lying down.

Emilie is sharing her story to raise awareness and support others battling the invisible struggles of PoTS.

Emilie first started showing signs of PoTS when she was 8 years old. It started as intense heart palpitations and sharp chest pains. She said: “Initially I was diagnosed with Inappropriate Sinus Tachycardia. I didn’t feel like many doctors took what I had seriously, they always put it down to anxiety, but I knew it wasn’t anything to do with that."

Emilie faced a long 10-year journey to reach a diagnosis. Shortly after turning 18 years old she began fainting multiple times a day at university. Emilie said: “In March 2022 I was finally diagnosed with POTS following a tilt table test that showed my heart rate spiking from 60bpm to 180bpm within 10 minutes of starting the test.”

Emilie also expressed her experience of medical gaslighting, particularly as PoTS is an invisible disability. She said: “I’ve had to fight just to be listened to. I’ve been in the ambulance service and know exactly how the body works yet a doctor wouldn’t listen to me when I said something wasn’t right.”

When Emilie was diagnosed with PoTS she was at university studying to become a paramedic. At the end of her second year she was told it was unsafe for her to work in the ambulance service and had to leave university.

This put Emilie’s whole career on pause. She said: “I went from working on 999 calls, doing CPR and saving people’s lives to spending a lot of my own time in a wheelchair, struggling to do simple daily tasks without passing out or being in severe pain."

Letting go of her career was incredibly difficult. Emilie said: “I was disappointed in myself, but also felt others would also look down on me.”

Emilie has trialled various medications to help her symptoms, but there is no clear course of treatment. She said: “They put me on a low dose of Bisoprolol, a beta-blocker which didn’t do anything. We then tried a higher dose which stopped me fainting multiple times a day but instead when I did pass out it was a lot more severe.”

Emilie added: “We then tried Ivabradine briefly but then found this was incompatible with other medications.” She is now waiting for a better option for medication.

Lifestyle changes have helped Emilie get through daily tasks. She uses a wheelchair part-time to prevent her heart rate spiking by minimising postural changes.

Emilie now has a medical assistance dog, Bean. She said: “Bean is trained to smell changes in my saliva that indicate my heart rate is about to spike and tell me before I pass out.”

Bean has inspired Emilie to begin her new career of opening an Assistance Dog CIC/organisation called Canine Allies CIC.

Emilie said: “A lot of the people I help also have PoTS. I have been able to create a support community to share tips for coping and different strategies to manage our energy levels.”

Emilie urges people to check in on those who are struggling with PoTS. She said: “Having a support group of friends and family while struggling with an invisible disability has been the best treatment I’ve had.”

Emilie hopes that by sharing her story she can encourage people to fight for their health to be taken seriously. She said: “I had to fight 10 years for my diagnosis, it was never easy, it still isn’t.”

She added: “Having an answer means I am able to understand more about myself and not be disappointed in the things I can’t do, but to look after myself instead and understand that my body simply needs a bit more help!”

On the 25th of October – PoTS Awareness Day – almost 60 buildings across the UK will light up purple to raise awareness for PoTS. Among those showing support is Queensgate Peterborough.

The Light Up campaign is organised by PoTS UK, a small charity dedicated to supporting and educating patients, families, and healthcare professionals across the UK. PoTS UK raises awareness of this often overlooked and commonly misdiagnosed condition by sharing the latest evidence and resources.

You can show your support by sharing photos of the light-ups on the 25th of October via social media using the hashtag #PoTSAwarenessDay.

Find more information on PoTS at https://www.potsuk.org/

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