Blog

October is Dysautonomia Awareness Month, which probably isn’t something that has ever featured prominently in your calendar. Unless, of course, you or someone you love lives with dysautonomia.

In our family, it’s a little closer to home than it might be for most people. Three of us have POTS following COVID infections. For two of us it is just one aspect of the joy that is long COVID.

POTS is an invisible disorder. And here’s the thing about invisible disorders: just because you can’t see them doesn’t mean they aren’t there.

What on earth is POTS?

POTS stands for Postural Orthostatic Tachycardia Syndrome. That sounds like a bit of a mouthful, hence POTS.

Put simply, POTS is a condition affecting the autonomic nervous system, which regulates many of the things your body does automatically. This includes your heart rate, blood pressure, digestion and temperature control. All the things your body does and you don’t really give much thought to it. Until your body suddenly doesn’t regulate all these things automatically.

In people with POTS, standing upright can cause their heart rate to rise abnormally, often accompanied by a whole host of other symptoms. These can include dizziness, pain, palpitations, nausea, headaches, extreme fatigue and brain fog.

And when I say fatigue, I don’t mean feeling a bit sleepy after a busy day. We’re talking about exhaustion that can make ordinary everyday activities much more difficult.

Symptoms vary from person to person. Some people may struggle to stand in a queue, take a shower or walk around a supermarket. Others find that concentrating, managing school or work, or simply getting through the day takes far more energy than it takes everyone else.

There isn’t one universal POTS experience. That’s part of what makes the condition so difficult to explain.

Three family members with POTS

For us, POTS isn’t simply something to read about on a medical website and then forget about. It’s part of our family life.

Having three family members with POTS has also made me think about how people experience the world differently, and how easily we can make assumptions about what someone else is capable of doing.

We tend to judge what we can see. Someone looks well, so we assume they’re well. Someone manages to go out one day, so we assume they’ll be able to do the same thing tomorrow.

But invisible illness doesn’t work like that.

Energy levels fluctuate. An activity that seems perfectly manageable one day might be overwhelming the next. And the fact that someone manages to do something doesn’t necessarily mean they won’t pay for it afterwards. This is the joy that is PEM, which often goes hand in hand with POTS. Also common with long COVID.

So take this as a reminder that we rarely know the whole story behind another person’s day.

The problem with looking fine

One of the challenges of an invisible illness is that it can be difficult for other people to understand.

If someone has a broken leg, the evidence is there for everyone to see. There’s a cast, perhaps a pair of crutches, and an obvious reason why they can’t walk up the stairs.

POTS doesn’t come with a cast.

Someone can look perfectly healthy while experiencing a racing heart, dizziness or debilitating exhaustion. They might be sitting down because standing is difficult, cancelling plans because their symptoms have flared up, or struggling to concentrate because their brain feels as though it’s running through treacle.

From the outside, it can be tempting to assume that they’re simply tired, anxious, unfit or not trying hard enough.

But POTS is a recognised medical condition, not a lack of motivation.

And being told to push through, try harder or get on with things doesn’t make the underlying problem disappear. It does, in fact make it worse – this is when PEM flares up.

Sometimes, the most helpful thing we can do is believe people when they tell us how they’re feeling. And yes, that also applies to you if you are a huisarts (GP)!!

POTS and everyday life

POTS impacts most aspects of daily life.

Think about cycling, for example. Cycling is such a normal part of Dutch life that it’s easy to forget what a privilege it is to be able to hop on a bike and get from A to B.

For someone with POTS, though, physical activity, dizziness and fatigue can make getting around on a bike complicated. Feeling like you are about to faint whilst cycling is no joke (ask me how I know!).

Then there’s shopping. A quick trip to the supermarket sounds straightforward enough until you consider the standing, walking, bright lights and sheer amount of time spent upright. I pay afterwards for every supermarket run I make.

Even a hot shower can be difficult with POTS because heat can worsen symptoms. That combined with standing for a few minutes can result in many a near-fainting experience.

None of these things is necessarily impossible for every person with POTS. The condition affects people differently, and what someone can manage depends on their symptoms and individual circumstances.

But it does mean that activities many of us take for granted may require planning, adjustments and a certain amount of flexibility.

And sometimes, plans have to change.

That’s something worth remembering in a country where cycling everywhere, being active and simply getting on with things can feel like the norm. Not everyone can operate at the same pace, and that’s not a personal failing.

The challenge of being believed

Getting a diagnosis of POTS can take time. Its symptoms overlap with those of other conditions, and people may experience a wide range of problems that don’t immediately seem connected.

For someone who is already dealing with fatigue, dizziness or difficulty concentrating, trying to explain what’s happening while also looking for answers can be exhausting in itself.

I had to do a lot of research and make multiple appointments with my GP before I got anywhere close to getting help. I got a kick up the bum to take action after my son had a NASA lean test at the long COVID expertise centre at the WKZ hospital. He fainted during the test. I had been struggling for months with near-fainting incidents, so did the NASA lean test at home, and followed up with my GP on multiple occasions to get help. I was referred to a cardiologist to rule out any other causes, and eventually put on medication. Which helps, but certainly doesn’t cure POTS or make me symptom free.

I’m not going to pretend that every person’s experience of healthcare in The Netherlands is the same. Nor is it fair to suggest that every doctor will dismiss symptoms. But conditions that are less familiar can be harder to recognise, and greater awareness can help people know what questions to ask and where to look for reliable information. If you think something is not right, keep going until you get help.

If you suspect that you or someone in your family might have POTS, speak to your huisarts (GP). Symptoms can have several possible causes, so getting appropriate medical advice is important rather than assuming that POTS is necessarily the answer.

What can you do to help?

The good news is that raising awareness doesn’t require a medical degree. Sometimes, it’s about making a few small changes to the way we think about other people.

Believe people when they tell you they’re struggling. They shouldn’t have to prove how ill they are before their experience is taken seriously.

Be flexible. If someone cancels plans, needs to sit down or has to leave early, try not to take it personally. Sometimes, adapting the plan is what makes it possible for everyone to take part.

Don’t assume that yesterday predicts today. Chronic illness can fluctuate. Someone managing an activity once doesn’t mean they’ll always be able to manage it.

Learn a little about invisible illnesses. You don’t need to memorise every medical abbreviation, but understanding that a person can look healthy and still be seriously affected by a condition is a good start.

And, perhaps most importantly, remember that people are more than their diagnoses. POTS may affect someone’s life in significant ways, but it doesn’t define their entire identity.

October is Dysautonomia Awareness Month

Dysautonomia Awareness Month takes place every October, helping to raise awareness of conditions that affect the autonomic nervous system. POTS is one of them.

For me, this isn’t simply another awareness campaign to add to the calendar. With three members of my family living with POTS, it’s an opportunity to help other people understand a condition that might otherwise remain invisible to them.

We can’t make every day easier for someone living with a chronic disorder. We can’t always understand what they’re experiencing, and we certainly can’t fix everything with a few well-meaning words.

But we can listen. We can learn. We can be a little more patient when someone needs to do things differently.

And we can stop assuming that someone who looks fine must be feeling fine.

Because sometimes, the things we cannot see are the things that matter most.

The post What Is POTS? The Symptoms, Challenges and Daily Impact appeared first on Turning Dutch.