This July, PoTS UK are encouraging people to Take a stand for PoTS, spreading awareness of the often misunderstood and chronically under-diagnosed condition, and working together to help people living with the condition that they are no alone. Bringing awareness to the experiences of living with invisible conditions is at the heart of Sea Invisible and why I thought it was so important to start writing about my experiences of health services and life with invisible disability.
This is my experience of living with PoTS for over half of my life, before eventually being diagnosed late last year, completely by accident.
When I was in Year 9 of high school, I started fainting regularly, pretty much on a daily basis. The first time was in science class while we stood watching the teacher doing an experiment and it was taken pretty seriously. I was taken to the matron’s room and sent home.
But then it started happening all the time. In music lessons, when stood singing, and most often, in PE. I hated PE. I know now, that my severe hip dysplasia was behind my inability to run far, if at all, and my PoTS was causing the severe breathlessness and chest pains I had during PE lessons, but I didn’t know that then. And no one else knew. But everyone knew I hated PE. And I started collapsing during almost every PE lesson. And because I hated PE, I never looked that unhappy about being excused. And so the obvious conclusion was that I was faking it.
A PE teacher once asked someone close by how I looked when I lost consciousness, in a desperate attempt to prove I was putting it on. Tests for epilepsy proved inconclusive and I was discharged, with everyone knowing I’d made it up, but I was so good at pretending to faint, they couldn’t do anything about it. Then came sixth form, and my PE kit was put away forever.
But the fainting didn’t stop. And the chest pains didn’t stop. And the breathlessness didn’t stop.
The fainting did become less frequent, but I have fainted in every job I’ve had, and been taken to A&E regularly. I’d be laid down on a stretcher, for hours, at the bottom of the list in terms of emergencies (fair enough) and after being laid down for hours they’d do an ECG, which of course would be normal, and then they’d send me home with my diagnosis: panic attack.
In early adulthood “panic attack” became the new “faking it”. I do suffer from quite severe anxiety and I do have panic attacks, but my PoTS episodes are not the same thing. I knew this in the core of my being, but no matter how often I told doctors I couldn’t breathe and my chest hurt, the more they would insist I just needed to calm down. I would beg them to listen. I knew I wasn’t having a panic attack, but the more you insist on something, the more emotional you get about it and the more you look like you’re having a panic attack.
So I gave up. For years I quietly learned how to manage my episodes, hiding in the accessible toilets at work lying on the floor (unhygienic but better than wasting a day in A&E) and never telling anyone about my symptoms. I did have another period of severe fainting, often accompanied by convulsions, but when tests for epilepsy again proved I didn’t have it I was told it was all in my head and recommended for cognitive behavioural therapy (CBT), which I declined because I refused to accept the statement that I was, as one doctor put it, “throwing myself on the floor and jiggling around for attention”.
Of course, I was also told, until I was 24, that the pain caused by my hip dysplasia was in my head. That is a whole other story, but it did lead me not to trust doctors who insisted I was imagining things.
Then one morning I woke up with my right arm in complete agony and after panicking I was actually having a heart attack (then realising it was the wrong arm), my friend took me to A&E where a doctor popped my dislocated shoulder back in and, after reluctantly accepting I’d managed to dislocate it in my sleep all by myself, diagnosed hypermobility spectrum disorder.
Months later, my new rheumatologist reviewed my notes and asked about my fainting episodes, chest pains and breathlessness. It was him who mentioned PoTS, which I had heard of when reading one of Ella Mills’ recipe books, but had never considered as a possibility for myself.
He referred me to a cardiologist who did the usual ECG, which was normal. But, for the first time, he asked me to stand up afterwards and he repeated it, and that wasn’t normal. Then, he did a 24 hour recording, which was followed by the diagnosis of PoTS.
At the time, my cardiologist actually said to me he’s always reluctant to diagnose PoTS, and prefers to work on symptom management, rather than giving people a “life-changing label”. While I can see where he’s coming from, I also think this is a big part of the problem with PoTS diagnosis and treatment.
By saying you don’t need to be labelled with it, you’re adding to the belief that it isn’t something that should be taken seriously. I’ve never heard a doctor refer to any other condition in this way.
Also, having been labelled as a faker, drama-queen and hypochondriac, I needed the label. The label is the proof that I’m not imagining or making up my symptoms. That they are real and they have a very real effect on my day to day life.
All of my conditions, without exception, were originally diagnosed as being in my head. This made doctors more likely to say something was in my head when I spoke to them about it, because I was a confirmed imaginer of illnesses, and, when I received my eventual diagnoses, it completely destroyed my trust in doctors and their ability to take me seriously.
I am the biggest believer that no one knows your body like you do, so if you know something isn’t right, keep pushing your doctors and never, ever, be afraid to ask for a second, third or fourth opinion if you need to.
Take care,
Donna
Self-care snippet
Last weekend, I reviewed Trees: An Audio Journey for North West End UK, which was a lovely self-care experience. A guided walk, which can be done at your own pace, wherever you like, and has plenty of rest breaks built in, it was a really nice piece which beautifully fit with the themes of Physical Fest, while remaining accessible. Some of it did make me smile a little, such as the references to learning to walk at 18 months old (I was far older than that!), and it became quite chilly during my walk on the beach after sunset, but overall this was a magical piece which created a very personal experience. Physical Fest has now ended, but the piece will be available again as part of Be Festival.
Things I’ve seen, heard, read and talked about
Increase funding to provide support and research into Tourettes Syndrome If you are based in the UK, I would be hugely grateful if you can please sign and share this vital petition. It is running until 16 August and they need to reach 100,000 signatures before this date. Tourette’s is not by an means rare but it is still exceptionally difficult to get a diagnosis and the treatment needed. Care for Tourette’s is based on a postcode lottery and if you do not live in an area with a specialist centre, you cannot get the correct support at all, so this petition is really important.
Revitalise on BBC Radio Merseyside (from 48:57) A lovely charity who provide unforgettable holidays for disabled people and their carers at their centre in Southport. The pandemic has isolated disabled people, many of whom have had to shield, more than ever and Revitalise have provided emergency respite during this period. Breaks are vital for disabled people and their carers and this charity is creating this opportunity in an inclusive and fully accessible environment.
Prof Robert Winston: ‘The publicity around IVF is very misleading’ A very emotional piece about the effects of life with infertility and the widespread (and incorrect) beliefs that people have about it.
The new Manchester bar where staff can take your order using sign language 53Two bar is now open and is fully wheelchair accessible and all bar staff are trained in basic sign language for deaf and hard of hearing customers. This sounds like a great thing for all bars and other establishments to aim for. They’re also working towards a fully accessible theatre space which is great news.
Deaf Active on BBC Radio Merseyside (from 2:39:40) A passionate charity who support deaf and hard of hearing young people, children of deaf and hard hearing adults and their hearing friends and families. The pandemic has had a massive effect on the deaf and hard of hearing community; I myself have some hearing loss and have really struggled being able to hear people when they are wearing face masks as I do rely on being able to lip read to some extent. Access to healthcare is also an issue, with interpreters rarely being available at short notice and the move to GP telephone appointments has only exacerbated the isolation felt by the deaf and hard of hearing community. The charity are trying to plug the gap left by the government and raise awareness of the issues affecting the community.
Headspace Dance Break: Disability Artistry - Widen Embodiment I saw this on Headspace’s Wake Up feature this week and had a nice little dance in my living room (before I opened the curtains!). Dancing has always been difficult for me as I am so conscious of how my body moves (or doesn’t move!) and a self conscious dancer is a bad dancer. This is a great video as it widens the perspective about dancing and what it is. Movement is for everyone.
Kellogg’s rolls out “world-first technology” for cereal boxes Kellogg’s are introducing new codes on their cereal boxes which blind and partially sighted people can use to have product information read aloud to them on their smartphone. Created in collaboration with children from St Vincent’s School in Liverpool, this is a great step forward and shows how the simplest things can improve accessibility and inclusion.
Thank you so much for sharing our petition https://petition.parliament.uk/petitions/575370 we are trying extremely hard to get more signatures, so this is very much appreciated 💚