Postural Tachycardia syndrome: “I was, admittedly, infamous for fainting”Antoine Coypel

As I was eating my lunch one day in my school canteen, illness dawned on me. I was, admittedly, infamous for fainting. One rumour suggested that I fainted into a cake. To this day, I protest I merely fainted next to the cake. But this time was different. This particular incident in the school canteen led to a series of tests, ECGs, the whole shebang. The next few months (slap bang in the middle of Year 12) would leave me spending most of my days in bed. Until I finished Year 13, I was on a massively reduced schedule, missing around half of my timetabled lessons.

So what was this mysterious illness? After months of somewhat pointless GP appointments, one of my friends eventually mentioned postural tachycardia syndrome (POTS). I promptly arranged a meeting with a specialist in London to try to finally diagnose the problem. During the check-up, he took one look at my strangely purple feet (caused by blood pooling downwards – one of the many POTS symptoms) and said: “yes, that’s POTS.”

Access to the right specialist immediately solved the mystery. I was very lucky: according to Dysautonomia International, it takes an average of five years and eleven months to confirm a diagnosis. As with most invisible diseases (as POTS is), many patients are told ‘it’s all in your head’.

"Sometimes half the battle with an invisible illness is forgetting about what you can’t see"

Postural tachycardia belongs to a group of diseases linked with autonomic dysfunction. The main symptom with POTS is an increase in heart rate when standing. One of the worst things about an invisible illness is working out how, when – or even if – to tell people I’m ill. As an English student, lacking any scientific skill or knowledge, I naturally resort to a party trick. I sit down. My pulse is a pretty standard 60-70bpm. Then I stand up. I measure my pulse with my fingers and it shoots up. Everyone is intrigued and slightly confused. My standing pulse can be as high as 120bpm, or 90bpm on a good day.

Then I have to explain all the weird problems that come with it. Imagine running. The heart beats at a pretty high pace. For anyone with POTS, simply standing up achieves the same bpm as running. Going through a normal day is like running a marathon. As a result, the main symptom (for me personally, but symptoms vary in POTS-land) is fatigue, especially in the morning. Other symptoms can include fainting, abdominal problems (gluten-free diet recommended), and brain-fog (which explains a lot if you know me). My personal favourites are the flexible joints and the aforementioned purple feet and hands. Ecstatic as I was to receive my Cambridge offer, I was a tad nervous about living and studying in this infamously active bubble.

A diagnosis is – sometimes unfortunately – the best thing to legitimise an invisible illness. With this information, the Disabilities Resource Centre (DRC) has been nothing short of amazing. As soon as I received my offer, I notified Cambridge about my illness. The DRC helped where the DSA report (drawn up after I underwent a three-hour meeting with a lady in Luton) failed. At first, DSA support was limited to getting a free Dictaphone for lectures. During the first few weeks here, it became clear that I would not be able to attend any early morning lectures. Sympathetic to the cause, my DoS pushed the DRC to get me a note-taker to go in my place. Eventually, a note-taker was secured. My college even paid for the first few weeks of support before the government confirmed their approval. I was frequently assured of the ‘large pots of money’ that just had to be opened up. There is help out there.

For all our efforts, however, no amount of money can be thrown at my dysfunctional nervous system to fix it completely. Although I’ve not yet sat any official exams, prelims were an experience surely dragged up from the depths of hell. Sitting in a boiling room (did I mention that heat intolerance is also planted in POTS’ pot?) for four hours at a time was far from ‘academically stimulating’. Despite all the exam support, the extra time, and the rest breaks, POTS cannot help but assert its presence. Sometimes I think it’s just compensating for its invisibility. POTS is such an attention seeker sometimes.

Luckily, I have found an antidote in the form of Cambridge’s theatre scene. People often forget that, at its heart, student theatre is an outlet for creative and social escapism. Sometimes half the battle with an invisible illness is forgetting about what you can’t see. Ashamedly, I often bite off more than I can chew. One of the first things my specialist said to me was that living with POTS is like learning a new A Level. You have to know how to live with it. Over the past few years, I’ve learned how to pace myself. With all the independence that the Cambridge bubble – and an English course – grants, it’s easy to steer the bus too quickly over the cliff. One of my most anxious moments of the Edinburgh Fringe was the 6.30am wake up call for the tech rehearsal. It was rough, but do it once and it’s okay. Do it twice and it’s pushing it. Three strikes and you’re out. Unfortunately, the chronic aspect of POTS is what many onlookers fail to grasp.

Living with POTS is difficult. Sometimes, with a water bottle and a seat, we’re good to go. Nonetheless, with the fantastic support I’ve been given at Cambridge, the struggle has been eased immeasurably. Just please give me a seat on the tube.

If you just find POTS fascinating, you can track down more info here: http://www.potsuk.org