Dysautonomia (POTS) - Barriers to Diagnosis

POTS is a sub-type of Dysautonomia, which is not rare. A social media campaign currently circulating by Dysautonomia International explains that POTS is more common than well-known diseases such as Multiple-Sclerosis.

Yet - "the average time to diagnosis is 5 years and 11 months" - Dysautonomia International. In my opinion given the prevalence of the disorder - it should be something that is screened for in a GP office when a patient complains of certain symptoms. If this had happened for me, It would have saved over a year of circling around Drs offices, building tolerances to painkillers, and slowly losing physical function without explanation.

And I'm one of the lucky ones.

Preliminary testing for POTS is simple. It's a quick test that can be done in any GP office. It's cheap, and also a very strong indicator that the patient should be referred to cardiology for further evaluation. Because if it's positive, they probably have POTS. If it's negative, it should be repeated when symptoms persist. Dysautonomia/POTS doesn't always show on-demand. There are other conditions to exclude, things to be sure of before labeling someone with the condition, however that pre-check is easy and quite a strong indicator. There is no excuse not to be running it.

So... what's the problem, you might be asking? well. There are a few:


Disconnected symptoms:

When someone develops POTS - it often shows up as a set of apparently disconnect symptoms that are difficult to pinpoint. POTS can be developed after a virus such a Epstein-Barr (Mono/Glandular fever), so it can sometimes look as if someone is simply recovering very slowly. They may have headaches that linger, struggle to exercise, get out of bed, etc. This is partly what happened to me. But my Drs just said 'wait, you'll come right'. They told me to take it easy at first... then they told me not to. They told me to get back out there, run, do normal activities. In the vein hope that my body would just 'forget' it was in a state of complete confusion and disconnect. Needless to say this didn't work.

Others will develop it suddenly. They will wake up one day not able to get out of bed, with no clear reason why. The symptoms can be so dramatic they will end up in hospital. Some will present with severe stomach pain and vomiting. A racing heart - dismissed as 'distress'. Others present with not being able to stand or even sit up without passing out. A pounding head. Still others will have that racing heart and such intense fatigue they can't lift their heads.

Every 'routine' test will be run and come back clear. These people are sent home. Told it's 'viral' or 'anxiety'. They rest, and relex, and de-stress, and get worse instead of better. It can be years before they figure out what has happened to them, by which time they might be bedridden.


Women's Health Care

POTS is more common in women than men. Similarly to when we have a heart attack, or any other medical problem under the sun, we are often not taken seriously when we describe symptoms that cannot be seen. POTS is put down to anxiety, depression, hormonal imbalance (that is then not treated because it's not actually there), anything that sounds 'feminine' and a Dr can write down in order not-deal with us. The amount of us that are referred to a psychiatrist before being diagnosed with POTS is predictably not officially recorded, but it diabolical. From what I see online it feels like about 2/3 of us.

Here is a quick-stat quote from 'Doing Harm': “Only 15 percent of the doctors diagnosed heart disease in the woman, compared to 56 percent for the man, and only 30 percent referred the woman to a cardiologist, compared to 62 percent for the man." ― Maya Dusenbery, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

I think "Doing Harm" puts it beautifully when saying “Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it's worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar but as a whine.” ― Maya Dusenbery.

To those who think we're in a post-feminist society... ponder this for a moment. Here we have a chronic illness that is not rare, and shown to be prevalent in women. All facts point toward the suggestion that the delay in diagnosis is because the medical system does not listen to us. Even when we do fill our lungs and roar for our lives, the system cannot find a way to screen for this. sometimes it feels a little bit like they just can't be bothered.


Socio-Economic Barriers

I live in a country with a state-funded health system. A good one. It's a bit overloaded, like they all are. But - we muddle along pretty well. However if you've got a chronic illness, you will find yourself with Drs literally sending you out of their office saying 'good luck to you'. Having not offered any assistance.

The strain on the public health system here is such that we also have private health care, and you can opt to have health insurance and use the private health system for many aspects of your health care. If you can afford it. Health insurance is expensive, and pre-existing medical conditions are not covered.

When I was un-diagnosed I did not have health insurance. I relied on the public health system. I very quickly learned that a 3 month waiting time for a doctor was quick. 6 months was annoying, and I've done longer. I've tried not to complain too much to my family or friends about it, or the health system itself. Because what can they do? it's true that I'm not dying, and other people might be. We're put onto the same cardiology waiting list for POTS as the people that might keel over from a heart attack tomorrow. Who goes first? it's a no-brainer.

The problem is; once we have achieved the victory of getting our doctors to take us seriously and refer us to a specialist we have to wait another 6 months on average to see that person. And then it's pot-luck if they have even heard of POTS. These waiting times slow down our access to care and the longer we wait, the worse we get. More of our life gets wasted waiting.

It's survival of the richest.


There are so many more issues I could write about. The stigma, self-doubt when the diagnosis does finally come, access to gold-standard testing in certain countries. Awareness among Drs. Refusal of appropriate treatment as a result of these barriers. But I would be writing for hours! These are 3 of the big ones. They're also pretty solvable in my opinion. We just need to get our acts together.


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Also, give it a share! it's Dysautonomia Awareness Month. We want to shout our stories from the rooftops. I am so stoked at how many people my last post reached. Thanks to everyone who helped that happen.

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Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

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