The Invisible Work of Having an Invisible Illness
In a 2024 study by Boris et al., 271 people with Postural Orthostatic Tachycardia Syndrome (POTS) were asked about their experiences of the condition. The survey, which looked at “long term outcomes” took place in 2021 and was based on people diagnosed with POTS aged 18 years or younger between 2007 and 2018.
Eighty-five per cent reported that POTS caused at least 10 symptoms. More than half reported at least 15.
The most commonly reported symptoms included fatigue; intolerance to heat, cold and exercise; brain fog; insomnia; excessive sweating; early satiety (feeling full quickly); increased sensitivity to sound and light; joint and muscle pain; constipation and diarrhoea; dizziness; and headache. Symptoms that were severe at their worst could be mild, or not present at all, at other times. Only fatigue and heat intolerance were reported to never fully resolve, with fatigue rated as the most severe symptom overall. Most of these symptoms are also difficult for anyone other than the person experiencing them to assess. You can't necessarily see fatigue, brain fog or sensitivity to light and sound in another person, and even when someone describes their symptoms, their description depends on their own experience and frame of reference. In some people, POTS symptoms started quickly, after an event like a viral illness. Others couldn’t point to an event that started it.
If you’ve been experiencing this collection of symptoms on and off for months or years, how are you communicating it to your medical team? How do you explain experiencing 10 or 15 seemingly unrelated symptoms without sounding as though you’re complaining about everything? Especially when those symptoms don't stay the same. It can be really confusing when you can stand and chat easily one day, and struggle to remain upright to brush your teeth on another. And then by the time you get to the doctor's appointment you booked weeks ago, the symptom that was severe when you made the appointment may barely be there.
That variability is part of POTS, and I think it’s part of what makes the condition particularly difficult to describe, and particularly easy to misunderstand.
Before diagnosis, nearly 65% of people in this study had been told they were experiencing a psychological or psychiatric disorder. More than half (54.9%) had been told by a doctor that their symptoms were “all in their head”, or something similar. You might expect that receiving a diagnosis would change those numbers. However, after diagnosis, 49% had still had their symptoms attributed to psychological or psychiatric causes, and 31.6% had still been told something similar to “it’s all in your head”.
Perhaps one of the most striking findings was that 74.9% had at least one doctor tell them that they had never heard of POTS. When participants tried to explain the condition, only 40% felt that the doctor listened to them.
I find it unsurprising, then, that more than 96% of the people surveyed had done their own internet research to try to understand their condition. POTS has gained a reputation as one of those conditions people “diagnose themselves with on the internet.” But when three-quarters of patients have encountered a doctor who has never heard of POTS, where else are people supposed to go to make sense of what is happening to them?
This leaves people diagnosed with or suspecting they have POTS in a difficult position. They may be experiencing a large number of real, sometimes severe symptoms. Those symptoms can be invisible to others and fluctuate considerably. The person experiencing the symptoms may know more about POTS than the medical team they’re working with. And they’re trying to describe a complex collection of symptoms in a context where, as this study shows, those symptoms have frequently been interpreted as psychological.
There are two other details in this study that I think matter here: the majority of respondents were women (which is consistent with other POTS research suggesting the majority of people diagnosed are female), and the median age at which symptoms began was 13. Young people are having to notice what is happening in their body, work out whether seemingly unrelated symptoms might fit together, find the words to describe them, and then convince other people that something is wrong.
We often talk about POTS as an invisible illness because someone can look well while experiencing significant symptoms. But what is also invisible is all the work happening behind the scenes: noticing and keeping track of symptoms that change from day to day, connecting seemingly unrelated symptoms, deciding whether a symptom will hang around long enough to mention or whether we’ll be accused of crying wolf if it disappears, and trying to explain it all in a way that will make sense to someone else without being dismissed or having our symptoms attributed to anxiety.
The symptoms themselves may not be readily apparent to other people, but neither is all the work required to understand them, explain them, and be taken seriously.
Reference:
Boris, J. R., Shadiack, E. C., McCormick, E. M., MacMullen, L., George‐Sankoh, I., & Falk, M. J. (2024). Long‐Term POTS Outcomes Survey: Diagnosis, Therapy, and Clinical Outcomes.
Journal of the American Heart Association, 13(14), e033485. https://doi.org/10.1161/JAHA.123.033485
