In 2017, I saw a cardiologist for the first time. I had been referred after a rheumatologist finally believed the issues I had been going back and forth to doctors for since I was ten, seven years later. An hour later, the junior cardiologist pulled in his senior just to check some things, who told me I had ‘naughty girl’s syndrome’ – I simply wasn’t drinking enough water.
I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) a year later, a chronic illness characterised by your heart rate increasing very quickly after getting up from sitting or lying down and causing symptoms like dizziness, fainting, chest pain, heart palpitations, and shortness of breath.
My series of events is not uncommon. The time taken between seeking help and diagnosis stands at seven years, and national charity PoTS UK found in their 2025 survey that 85% of respondents struggled to access healthcare. This is only increasing with the number of patients acquiring POTS as a part of their long Covid presentation.
POTS: dismissed and disbelieved, but not a rare condition
POTS is not a rare condition, rather, significantly under-diagnosed. It is often seen as ‘just being a bit dizzy’ rather than the debilitating illness it is. As a condition affecting the autonomic system, which helps regulate many of the body’s processes, POTS has a wider-system impact than largely recognised in healthcare, including fatigue, nausea, and mobility challenges.
Chronic conditions impact every aspect of life. Non-disabled people often believe these sorts of illnesses are only an internal experience, but that could not be further from the truth. Society is not built for chronically ill people: from the nine to five working day all the way to the tiniest things like lack of seating in public spaces.
Having POTS and attempting to manage it takes up huge amounts of my time and energy, and costs significant amounts too. Scope’s latest cost of disability research found that disabled households need an extra £1,095 each month on average. For those with POTS, this can be in products and aids like expensive electrolytes, compression socks, shower chairs, or prescriptions, but it can also be the cost of time lost through being able to work less or time taken off for flare-ups.
Dynamic disabilities like POTS – those where symptoms and needs change, often even day to day – are not taken seriously. Society believes that if one day we can look fine, the next we must be lying, or that our access needs must be less real than we express. Employment, education, even friendship – this sort of ableism infiltrates every area we are attempting to navigate.
Parliamentary debate: awareness matters
October is Dysautonomia Awareness Month, and on the 14th at 11am in Westminster Hall, MPs will debate healthcare and support for POTS patients. The debate has been secured by Labour MP for Lancaster and Fleetwood Cat Smith who herself has POTS, causing her to almost faint during Covid when MPs had to queue outside to vote.
It is easy to assume that most MPs will not feel the need to attend this: it is hard enough to get them to attend some of the bigger debates in the main House. But this is a condition impacting an estimated four in every 2,000 people, only continuing to rise.
It is also critical to note that studies have shown that.) women (or, those assigned female at birth) are more likely to experience POTS, making this an issue of the significant medical misogyny we see within the system. PoTS UK found that 50% of their respondents were misdiagnosed with a mental health condition before receiving their proper diagnosis, making it a far too common experience.
MPs need to understand how debilitating a condition POTS can be, and how little support and treatment is given. Many patients are left without the care they need for years, when they could be living a life that is more manageable, or getting the accommodations and support they need from the systems we are forced to interact with.
What can you do to help?
The government is constantly pushing the importance of school attendance and employment. When 48% of under 18s with the condition lose over 3 months of school, and 37% of 25-50 year-olds have lost their jobs, it is crucial for systems to change how we are seen and supported.
PoTS UK have built a tool to help you generate an email to your MP to tell them about the debate and the reasons why they should attend. The more emails they receive, the more likely this becomes, so do encourage others to send one too, whether they are your friends or family, or you shout about it on social media.
Featured image via the Canary
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