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How to Reduce Anxiety Around POTS Symptoms

Updated: May 31, 2022

The transcript can be found under the video.

In today's video, I will be talking about fear and anxiety around symptoms. Often when I speak with other POTSies, the word "fear" and "anxiety" comes up quite a bit.

They most often report a fear of their symptoms. They are scared to go out or to do things they used to enjoy because of their symptoms. I'll often hear things like: will going to the store cause a flare-up? Will meeting with my friends cause me to have to stay in bed for three days afterward? How will going to work or school be?

This frequently leads to distrust in your body because you are unsure of what you can or cannot do. And you feel you're at the mercy of a body that you can't even control. This is terrifying. So, to some extent, dealing with a new diagnosis or new symptoms is normal because there is so much uncertainty in the beginning. But I do want to share some tips that might help with easing some of that fear around symptoms.

How Much Information is Right For You

When you're struggling with a condition like Dysautonomia, POTS or Long Covid, there is still a lot that is unknown about it. And, on top of that, there are so many different symptoms and it makes you wonder.. is this a POTS thing? Is this another condition? What is this new symptom? This can lead you down the research rabbit hole, but that comes with its own set of risks, and you don't want to get stuck down there.

Now, every person differs in the amount of research that they do and how much it helps or doesn't help every person is different. Understanding the condition is extremely important in the beginning because it makes a lot more sense when you understand various things about why your body is doing things. Perhaps there's a very logical explanation for why you always need to put your feet up, or why getting ready in the morning exhausts you so much, or why salt and water help so much? But, of course, you should always get your information from reputable sources. While Facebook groups, for example, can be useful in terms of information, it can be easy to get caught up in doomed scrolling.

Comparing ourselves to others and their symptoms, then how perhaps we might end up in the same case that they are, it's quite easy to get caught up in that. Get informed but set limits for yourself. Some people even have success with things like worry postponement, right? "I'll think about it later, not now." Perhaps you even set up different times to conduct research on your symptoms, and that research can be further subdivided into different types of research. For instance, why is this happening? However, you should also look into research on actual actionable lifestyle changes you can make, as well as different therapies you could try. Sometimes you just do need to reach out, vent, or just engage in a bit of doom scrolling.

Maintaining Your Routine

Maintain your routine but with changes and modifications. So one of the most frustrating things about illnesses is that flare-ups can just happen. There's not always a clear cause, mostly in the beginning. Over time you might become more aware of the subtleties that can bring on a flare-up.

So when I work with clients, we do quite a lot of work around trying to figure out patterns and baselines. They do notice that there is more awareness over time as to what is happening, and why it's happening. But what I often see mostly, in the beginning, is a fear of going out, or doing various activities. That could lead to you gradually withdrawing more, and those activities could cause even more anxiety and fear.

Now, I see this happen pretty often with others but I've also seen it happen a lot with myself. I remember how that used to be. Using this kind of safety behaviors can even deplete our sense of self-confidence over time. This kind of behavior can stop us from doing things we would like to do, and it even caused more of a restricted life as there's just so much fear.

This differs for everybody and at everybody's levels, where they are exactly in their chronic illness, and how severe things are. For example, is there a way that you could do the activities you were doing before but with some modifications? What modifications can you put in? So for example, mornings can be really tough for a lot of POTSies. So how can you simplify your morning routine so that you're still taking care of yourself? Perhaps you're moving around a bit but without getting depleted.

I remember I used to feel so drained every day by the time I finished getting ready for my day. So, I simplified it as much as I possibly could. I used to do things like wear jewelry, and I would put makeup on. And I got fully rid of that. I made sure to wear even the clothes changed, it's kind of the comfiest clothes I could fit in, the ones that were easiest to put on. Really just kind of stripping it down to its basic core like wash my face, brush my teeth, put on clothes, boom!

I was also working from home with something that took me a little while to ask for the request and to put that in, but I was able to start working from home, and that helped a little bit. The grocery store was a nightmare. Even things like always having a little cart to lean on, or things like that. Just trying to engage as much as possible, and kind of the day-to-day activities you used to have, but again with modifications.

Coming with that having a backup plan. How can I go to this event? How can I hang out with my friends and still enjoy myself? What modifications do I need? How do I communicate those modifications?

If there's a worst-case scenario that I'm thinking of in my head, well, if I go there this might happen. What can I do or what can I do to make it so it doesn't happen or to make it so that it does happen? You know, where can I rest or how can I do things? It's important to have something to look forward to in your days and to find a way to treat yourself. As a result, this can be very important as part of that.

Accepting What Is

Accept that some things cannot be controlled. Now, this sounds the simplest out of all of them. But of course, it's probably the toughest out of all of these. Acceptance is a word that gets thrown around a lot but what is it? Let's start with why it's not. Acceptance is not giving up. Acceptance has been one of the toughest things for me. I've planned my life. I really love to plan but then everything came crashing down around me.

I pushed and pushed against it, hoping to get back on track with my original plan. That didn't work either! People might push themselves to go to a barbecue party despite the fact that they know they'll be outside in the scorching heat, which will cause them to flare-up. However, thinking of the situation through the lens of acceptance, going to that party in the heat might cause a flare-up and palpitations and a few days in bed as a result. Okay! Do I take that? Do I not? If I do, what can I do differently? What modifications can I put in place?

Maybe I could bring a small chair or stool with me; there are so many portable ones these days. Alternatively, I could wear a cooling vest or bring electrolyte water with me. What modifications can I make in place to at least ease the flare-up If it does happen? It can become much more free to accept the fact that, it is what it is, and focus on how you can adjust your life to what it is.

Over time, when working with my clients, this allows them to still take part in activities that do bring them joy. As you continue working together, they're able to do more and more and more and they need even less modifications. That makes them quite happy. But, let's say, with acceptance, your starting point is: I know I need to go to a barbecue party, and I don't want to have any symptoms like I used to. And then, even if you do notice a small positive change, you may not notice it because you're too preoccupied with looking into the distance and seeing how things should be rather than what they are.

This actually allows you to celebrate small achievements, right? Going to a party and just going there you know, that's already an achievement in and of its own. Once you stop wasting your time on what you cannot control, you are then free to work on what you can't actually change.

Being Gentle

Self-care, the first step of this is to begin by recognizing that these symptoms are not just physically exhausting but they're mentally draining as well, Which means you need to treat yourself with extra kindness. It's not your fault that you're sick. But now that you are, you need to treat yourself gently. Engage in self-care activities that bring you joy.

Look around and reflect. What does bring you joy? And even looking at this through kind of a holistic lens. So looking at things like social activities and support. Would you like to catch up with old friends? Or perhaps, make new ones? Are there online communities that you could join?

Now, with the pandemic, there's been more online communities popping up. Looking too at the lens of stress management, how much stress is there in your life at the moment? How can you reduce it? What else can you do to aid that? Looking at things like diet; are you eating a balanced diet? Are you eating something that's nourishing your body? How can you change your diet to suit your body better? How can you incorporate movement whether it's stretching or a little bit of light yoga or just walking? Things too like hobbies, is it what lights you up? Is it reading? Is it a bubble bath? Is it painting, knitting, being out in nature? How can you make sure that these activities nurture you so that you can do more of them and get more out of it?

And remember that it will not always be this hard. Although fear and anxiety might take over, they may already be taking over parts of your life now. Over time, finding out baselines, what flares me up and how can I adjust this. Things will get better.

What have you found that helps keep your fear about your symptoms down? I'd love to hear your biggest takeaway down in the comments below.


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