Before we get into the nitty gritty details of life with postural orthostatic tachycardia syndrome, let’s begin this article with a quote from Winston Churchill. It is important for you to get to know me before my health condition, as I don’t like to be defined by my chronic illness; a fun fact about me is that I love reading inspirational quotes. They can be interpreted in many ways and make us feel hopeful in dark times. For where would we be without some heart-felt literature that really speaks to us? As Churchill once said, “if you’re going through hell, keep going.” Great advice! I try to remember quotes like this one to cheerleader myself through tough health days.
Now, let’s begin talking about what you really want to read about – the struggles of living with postural orthostatic tachycardia syndrome. postural orthostatic tachycardia syndrome is a notoriously difficult condition to manage, as there is no gold standard treatment – it’s a case of trialling various individualised treatment options to find out what does/does not help (Carew et al. 2009: 21-22). Arguably, the most dangerous postural orthostatic tachycardia syndrome symptom is fainting, due to the risk of head injury. According to POTSUK (a UK charity that raises awareness for postural orthostatic tachycardia syndrome) “approximately 30-60% of people with postural orthostatic tachycardia syndrome faint.”
I am one of the 30-60% of those that faint. It can surprise me at the most unexpectant of moments. I can get out of bed in the mornings, walk to the bathroom and boom! Before I know it, I am on the floor staring at the bathroom ceiling, only now even more desperate for a wee. The fear of fainting and hurting myself is high. The fear of fainting and not regaining consciousness is high. And yes, the fear of fainting in public is higher, with no choice but to accept help from passers-by who may not have my best interests at heart.
Having heard about such a debilitating symptom, you must think, “fainting must be the worst symptom for someone like you with postural orthostatic tachycardia syndrome, because it’s so dangerous.” Yet in reality, fainting is not the worst symptom for me. Let me explain. Imagine you are walking twenty metres from your car into work – you are panting and feel like you’ve just ran down the street. Then, you climb up four flights of stairs, which you have no choice but to sit on halfway, since you simply cannot catch your breath. Now for the next twelve hours you walk around at work, whilst wearing a mask, feeling completely rushed off your feet and gasping for breath. All you want to do is sit down and catch your breath but you can’t.
Does just reading this make you feel breathless? That is the reality of dealing with my most severe symptom, breathlessness. Breathlessness from postural orthostatic tachycardia syndrome cannot physically cause me long-term damage, fainting can. But you see, although fainting is potentially hazardous and unpredictable, it is short-lived. I fall, pick myself up and carry on with my day. However, breathlessness is the symptom that makes it difficult for me to get through each day. For me it is the ruthless, draining, persistent nuisance that contributes to my daily struggles.
There are techniques I try to help deal with my breathless, but I still have yet to find the best way. I stand infront of fans, I pull my mask down and poke my head out the window to be able to feel the cool, crisp air on my face. The cold seems to help, and alongside this I try various slow breathing exercises. Those truly are the best techniques that I have found so far whilst in my postural orthostatic tachycardia syndrome journey, but my journey is not over.
Thank you for reading this article. I hope that whilst reading this you were able to relate, empathise or learn something. Please remember, people with postural orthostatic tachycardia syndrome‘ experiences differ, some symptoms may be more bothersome for some people than other symptoms. This is just my reality of living with postural orthostatic tachycardia syndrome over the past five years. I did not want to write an article sugar-coating my reality of how living with postural orthostatic tachycardia syndrome can still be beautiful. Of course a life with postural orthostatic tachycardia syndrome is still a wonderful life, but it does not mean I should dismiss the severity of the challenges I face daily. Sometimes sharing your reality can help others feel less alone. Let’s end with my favourite quote for today “If you’re going through hell, keep going” (Winston Churchill).
References
Carew, S., Connor, M., Cooke, J., Conway, R., Sheehy, C., Costelloe, A., Lyons, D. (2009) ‘A review of postural orthostatic tachycardia syndrome‘ Eurospace, European Society of Cardiology. available from
POTSUK (2021) ‘Symptoms.’ available from
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