‘You need to get out more’ - being diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS)

The day I wrote this was not a good day pain or PoTS wise. As I was writing this, I had a little dog curled up on my lap with his head on my stomach.

I was diagnosed with PoTS in an A&E department in 2019. I say this because my development of the condition has no connection to coronavirus or vaccines. No one has ever been able to explain why I developed it, or whether it is linked to either the extreme emotional distress I experienced for months or cerebral palsy.

I had repeatedly attended doctors appointments and the hospital because my heart rate would suddenly jump too high and I'd feel dizzy and like I was about faint. I kept telling them something was wrong, but as I was dealing with a huge upheaval at that time and had been diagnosed with anxiety disorder only weeks before, people were dismissive. I was told to just 'go out more', 'try not to think about it' and 'keep busy'. It made me feel like maybe I was making an issue out of nothing. After all, the symptoms were coming up as anxiety. I was supposed to go on a once in a lifetime university trip to South Korea a few weeks later (I ended up missing that as the university couldn't justify bringing me, you'll understand why).

And I did, but the episodes were getting more frequent. Eventually, one day I had such terrible chest pain, sweating and felt so faint I thought I was having a heart problem. I rang an ambulance, and a paramedic came. They acknowledged my heart rate was high, but chalked it down to a panic attack. They told me to call back again if it happened.

The next day, it did as I vomited up my lunch.

I was brought to A&E and had to wait hours, getting ECGs and blood tests. A kind doctor sat with me and asked questions, then asked to do a final exam before I was supposed to be discharged to go home. They couldn't find anything wrong with my ECGs or bloods. I agreed, and just as I stood to leave, I had awful chest pain and dizziness again. The doctor called for nurses, who lifted me back onto the bed and tried to take a stable ECG. I was kept in and put on fluids.

Apparently I was severely dehydrated.

It happened again on the ward a few days later, after several IV fluids and a small dose of anxiety medication they decided to try me on. I don't remember much about being there, I mostly slept and tried to block it out, but I remember being hunched over in agony and the nurses and doctor drawing the curtain to try and find out what was wrong.

The day before I was due to be discharged, a doctor checked my notes and asked a nurse to do a test with me - lie down flat, sit up and stand...fast (as fast as you can with CP). Time it, check the pulse rate and see how long I could stand for.

I chatted with the nurse and started the test.

I immediately felt dizzy lying flat, waited the minute or two, sat up and then stood...and fell over into the nurse with the overwhelming weakness and dizziness. They gave me a standing frame and tried again five more times. Each time I would have a huge jump in heart rate and feel dizzy and faint. No matter what I did, I couldn't stand up for more than a few seconds.

The doctor came back to hear the results and nodded. He asked me to get my phone and type in PoTS, to research what that meant.

When I was discharged, I was given a diagnosis, medication and advice. Unfortunately, PoTS is still relatively unknown. It has gained more notoriety since it's more recent association with COVID, but there needs to be so much more research done into the condition.

I've had to learn what exacerbates my symptoms, how to manage flare ups and how to communicate my needs. It's a strange experience, having to learn how to manage an invisible disability on top of a highly visible one.

What struck me most about the entire experience was how people dismissed what I had to say. I tried to tell people something was wrong, but because of my anxiety diagnosis, I was ignored. You could hear people making comments. The medical gaslighting I experienced for months left me with an even deeper distrust for the medical system. I can't say it was anything new, I've been reliant on the medical system for over 23 years after all, but it was blatant disregard for what I had to say because I had a mental health diagnosis.

Even if it had 'just' been anxiety, I was being offered very little by way of support at the time. My symptoms had escalated to the point where I required hospitalisation, and clearly something needed to be done. Patting me on the head and handing me more leaflets about support groups and mindfulness was no use. I'd been on a waiting list for counselling for months with no luck. My anxiety, somehow seen as such a silly and trivial little problem, had become the new scapegoat. How easy it was for someone to remind me to practice my mindfulness, be patient and keep getting fresh air.

Not everyone was dismissive. My GP at the time, a woman, went above and beyond to help me. She organised my medication when it was clear that something needed to be done, ordered regular blood tests and talked me through all the results, discussed approaches to my mental health and listened to what I had to say. The doctor at A&E was incredibly thorough with his questions, as was the doctor on the ward. The nurses, ward attendants, and some paramedics were very supportive and kind, and tried to put me at ease. The pharmacists explained how my medication worked in a way I could understand it.

As a disabled person, it can feel like your disability is used as a scapegoat for every little issue. When you're given a mental health diagnosis, you're instantly dismissed as a hysterical hypochondriac. If you're a young woman, you're already fighting twice as hard to be believed.

My road to a PoTS diagnosis was mercifully very short, but one filled with pain and disbelief. It left me feeling like I shouldn't approach the medical system, but I know in myself that I need that very system to remain as healthy as I can. My only positive was that I learnt to insist, I learnt to be more determined: I would sit there for hours if necessary, I would wait until the phone eventually cut out. I would bring notes documenting symptoms, dates, times.

My experience is not a unique one.

We need to make sure that people are getting the proper treatment, that we aren't turned away or exposed to repeated gaslighting. Every person deserves to be tested and given appropriate medical care.