Lesley

Hi, my name is Lesley and I’m 32 years old. I have recently been diagnosed with PoTS after being misdiagnosed for over 20 years.

When I look back at my life, I’ve always been unwell in one way or another. If I’m honest, I don’t think I know what ‘well’ or ‘normal’ feels like. I’ve lived on a scale of extremely tired, to cripplingly exhausted. Each day I suffer from palpitations, breathlessness, chest pain, feeling nauseous, trouble swallowing, sweating, shaking and the list goes on. People always comment on how pale I look and how sickly I am with infections or viruses. One of my most debilitating symptoms has been fainting/almost fainting; if you name a place, I’ve probably passed out in it.

As a child, doctors told my parents that it was caused by dehydration, then a dip in blood sugar levels. As I got older it was puberty, hormones, exam stress; and finally, after a rough spell in my life it was anxiety and panic attacks. In my early 20s I was hospitalised with the symptoms and after lots of tests I was told I had tachycardia. This again was put down to stress/anxiety. So, I spent my late teens, my entire 20s and my early 30s battling ‘anxiety’. I worked hard to beat this by trying everything recommended to me – group counselling, cognitive behavioural therapy, self-help books, reiki, reflexology, CBD – but nothing helped my symptoms. There was no respite, only the feeling of being a lost cause.

Then last year, after a particularly bad few weeks involving a public faint and exhaustion which left me struggling to get out of bed, I tried yet again to talk to my GP. Thanks to my smart watch readings, I managed to get referred for another 24-hour heart monitor. Whilst waiting for this, I saw a social media post about PoTS. I’d never heard of it before, so I did some research and found their website. I read the symptoms page and thought that all sounds like me! I immediately tried and failed to get a check for PoTS added to the referral. Nevertheless, I felt hopeful as I had the monitor on a particularly symptomatic day; the results showed tachycardia with pulse rates of up to 189bpm. However, regardless of my insistence that I was not remotely stressed on the day of the test, this was put down to anxiety and my cardiology referral was cancelled. Again, I asked my GP to test me for PoTS and this time I was recommended to ‘let it go’ The doubts crept in – the doctors must be right, it must all be in my head – so I did indeed let it go. But then another tough spell came along, accompanied by another humiliating dismissal by a clinician, and I had had enough; I couldn’t take living like this anymore. I decided to do the only thing I could think of – I saved up and booked a private cardiology appointment.

This has been a decision which has changed my whole life. I was sure that this doctor would think it was all in my imagination, especially when he realised that I didn’t have a referral, had been unwell for years and had already been diagnosed with anxiety. But he didn’t patronise or dismiss me, he listened and understood. Within a couple of minutes, he assured me that my symptoms were not caused by anxiety; I cannot put into words how this felt. A few weeks later I was diagnosed with PoTS (suspected hyperadrenergic) and immediately started on medication. Initially, I was so relieved that I wasn’t going crazy, then I realised that not only does my future look different to what I expected, my past also could have as well; if only I had been listened to, believed, and diagnosed sooner.

I’m finding this hard to process and so I hope that by sharing my story I’ll help raise awareness of PoTS. After all, it was a social media post that put me on the path to a diagnosis that I have waited two decades for. 

I know I have a long road ahead of me, but at least now, for the first time in my adult life, I am fighting the right battle! So, my advice to anyone reading this is simple: trust your own instincts and listen to your body – no one knows it better than you (which is a lesson that I’ve learned the hard way).

Whatever you do, don’t give up!