Ep. 307 When your Chronic Illness Causes Anxiety

SUMMARY: 

In This Episode:

• What to do what your chronic illness causes anxiety 
• The Difference between POTS and anxiety. 
• How to manage POTS related anxiety 
• What is an “Adrenaline Surge”? 
• The Treatment for POTS and Anxiety 
• POTS AWARENESS MONTH

Links To Things I Talk About

• http://www.dysautonomiainternational.org/page.php?ID=30
• Overcoming Anxiety and Panic https://www.cbtschool.com/overcominganxiety
• ERP School: https://www.cbtschool.com/erp-school-lp

Episode Sponsor:

This episode of Your Anxiety Toolkit is brought to you by CBTschool.com.  CBTschool.com is a psychoeducation platform that provides courses and other online resources for people with anxiety, OCD, and Body-Focused Repetitive Behaviors.  Go to cbtschool.com to learn more. 

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EPISODE TRANSCRIPTION

This is Your Anxiety Toolkit - Episode 307. 

Welcome back, everybody. I am so thrilled to be here with you today. As most of you may know, it is OCD Awareness Month or Awareness Week. It’s just passed, and that’s something I’m so passionate about advocating for. But in addition to that, it’s also Postural Orthostatic Tachycardic Syndrome Awareness Month. For those of you who don’t know, I suffer from postural orthostatic tachycardic syndrome. We call it POTS for short. I’ve had multiple people ask me to do an episode about when chronic illnesses cause anxiety, and I thought this is probably the best week to do it. Not only is it awareness week or awareness month for POTS, but I actually have had a little blip in my own recovery in my POTS. So, I wanted to share with you my story and share with you how I’m handling the anxiety and health anxiety and stress and grief of that, and also just address some tools that have worked for me and that I’m hoping will work for you as well. If you have a chronic illness or even if you don’t, I think that these are really core skills that we need to practice just in regards of managing daily stress as well. 

You know what, before we do that, let’s go and do the “I did a hard thing” because this one is actually really touching and I would really like to feature. This was actually an email we received. I love getting your emails. If you guys are not on our newsletter list, please do go and sign up for our newsletter. We do give you access to the whole series. I created a whole website for the six-part mental compulsion series. It will be private just for people who sign up for the newsletter, and it’s got some amazing additional resources, PDFs, links that you really should check out. So, if you want to sign up for that, head on over to CBTSchool.com and you can sign up for our newsletter. 

This person said:

“I took a big leap of leaving my family and moving to China on my own.” Now, I totally resonate with this because I am in America on my own, even though I have my family. Leaving your home country is a big deal. It’s a huge deal. They go on to say, “The only thing, I haven’t been home to see my family in over three years, and I’ve been struggling so much. We hadn’t had a holiday in over two years, and I had been stuck in our complex for months. It was really, really hard. We finally were allowed out of our city, so we decided to go to Yunnan Province.” Hopefully, I pronounce that okay. “I was so worried that my OCD would come in hard and stop me from enjoying this amazing holiday we had planned for. I was strong and I did the hard things, thanks to you. I did a six-day hike at the start of the Himalayas, and I’m like, ‘Holy moly, that is amazing.’ I got engaged on Tiger Leaping Gorge. I ran down a bear and wolf-infested forest, and I slept in a tiny house next to pigs and cows.” What an adventure. “Kimberley, thank you. You have given me strength I needed. You are my inspiration.”

This is what I mean by why I love the “I did a hard thing” because sometimes the hard thing is getting out of bed. Sometimes the hard thing is facing a fear that you know is in your daily life. But sometimes your fear is like living a life according to your values and doing some pretty huge, openhearted things. And so, I absolutely love this “I did a hard thing.” Thank you so much, Leanne, for submitting this because there was something about it that just made me giggle like, holy moly, you really packed in some adventure into a short period of time, and well-deserved after being in a complex for so many months and years. Thank you so much for leaving that here in my inbox. 

Real quick, let’s do the review of the week so that we can head on over. This one is from Young Math Mama and they said:

“BEST podcast for a daily mindset reset. This podcast was recommended to me by my therapist, and it is one of my favorite ‘homework assignments’ to help me have a good mindset and feel inspired to try my best. I’ve learned so much great information from Kimberley, but the most important thing, in my opinion, is that I feel motivated to improve one small thing every time I listen. I’m taking better care of myself, which helps me take better care of my family.”

Literally, Young Math Mama, that is the absolute goal of this. I consider myself part therapist and part coach. I do a lot of coaching in my work and hopefully, I inspire you and motivate you all as well. Thank you so much, Young Math Mama, for submitting, and also Leanna. 

Update On My Pots/Chronic Illness

Okay, so let me give you a little background here. I haven’t shared this with you because I actually didn’t feel it was appropriate at the time for me to share, but I will share it now. As you guys know, I did a whole podcast about health anxiety, and this whole shocking episode where I had to get my teeth removed, one of my teeth got pulled out. Interestingly, since I had that infection in my tooth and I had it removed, almost all of my POTS symptoms went away. And the reason I didn’t want to share that, which is strange in hindsight why I wouldn’t want to share that, is number one, I wasn’t convinced it was long-term. Number two, I was really concerned that saying that would be really disheartening to some people who are still really struggling. Number three, I was a little worried. I had a bit of a placebo effect if I’m not going to lie. The doctor said it could actually help my POTS and then when it did, I was a little bit like, “Oh, is this the placebo?” I was just waiting for the shoe to drop, which is really not good practice. I wish actually now in hindsight I didn’t do that, but that is the way it played out. 

I have actually had an almost full remission. I do have some bad days. I do have some bad blood pressure days. But I was able to stand for the first time in many years. What I mean by “stand” is the day that I actually realized that I was in recovery from that. In the mornings, I always fill up my kids’ drink bottles and we have one of those filters in the fridge. And usually, it takes probably like 45 seconds, maybe a minute to fill up a drink bottle. But because I can’t stand up for very long or I get really dizzy and I can faint, it usually takes me two goes to fill up a drink bottle. I would fill it up for maybe 20 seconds, then I would go sit down just for a minute or two. I could feel myself get less dizzy and then I would go to do it again. 

You Must Find Rhythms

I have found a rhythm in my life, that’s how debilitating it is. But I had found these rhythms and routines in my life to where I could still fill up my kids’ drink bottles and no one needed to know that I was dizzy. I had found routines to mask it and I’d found routines so I could get through the day. And then I started to notice, oh my God, I’m halfway through filling up the drink bottle and I don’t need to sit down. I could actually fill this whole drink bottle without feeling really dizzy and nauseous, which to you might seem like an easy part of the day, but to me, that’s just a luxury I didn’t have for two years. So, I’ve been so thrilled and so overjoyed and actually really protective of my body because I’m like, “Oh my gosh, I’m in recovery. I’m really doing so well.” 

And then really why the “I did a hard thing” segment resonated with me is because when I came back from Australia, I was so happy and just my heart was so full and we hit the ground running. We really hit the ground running. My daughter started middle school, my son started second grade. They’re in two different schools now. My husband had gone back to another job. We’d just had some house remodeling done. The house was a disaster. We’d had a couple of other stressful events happen. About three weeks ago, I had gotten some really scary news about a loved one. I remember sitting on the couch and just being overwhelmed with anxiety. A massive cortisol, adrenaline surge just went through my body because I was really worried the lasted several days and then I didn’t sleep very well for a few days and then I stopped exercising as much as I was and probably didn’t drink enough water, which is all these things are really important if you have POTS. And I had also not kept up with how much salt I need to eat. I need to eat the most disgusting degrees of salt. It’s a common treatment for POTS. Most people are encouraged not to eat a lot of salt. People with POTS usually have to eat an immense amount of salt. 

My Pots Relapse

Unfortunately, I just started to have all of my symptoms returned. All of them I can manage, but the one that I’m struggling with the most is what they call an “adrenaline surge.” It’s common for people who have POTS. It just feels like you’re having a panic attack, but you’re not having a panic attack. You’re not worried about anything. I think that all of the stress and me loosening my recovery treatment is what caused it. But all of a sudden, I remember I woke up at three in the morning and I thought I was having a panic attack, but it was, now I understand, an adrenaline surge. It was just like someone had injected me with adrenaline and cortisol. At that time, I was like, “This makes sense. We’ve just had a couple of some scary things happen and life is pretty stressful. I’m obviously having a panic attack.”

So, first I want to teach you or show you or demonstrate to you that even though I had woken up in the middle of the night with a panic attack, I used every single one of my tools. I was like, “All right, brain, thank you for waking me up and bringing this to my attention in the middle of the night. There is nothing I can do about it right now. I’m just going to let you be there and we’re going to lay here until you’re ready to leave. You don’t have to leave if you don’t want to.” It took about two hours, three hours, which is pretty long and strange. I was like, “This is a bit strange.” 

When Your Chronic Illness Causes Anxiety & Panic

But then the next night, again, all day feeling anxious, on edge, but also using all my tools. Like, “It’s cool, anxiety can come along, no big deal, I’m cool with it” kind of thing. And then next night, wake up in the middle of the night at 11 o’clock because I go to bed pretty early. 11:00 PM, massive panic, adrenaline surge. Oh my gosh. Okay, now what? I get up and I’m like, “Something is up. I’m obviously struggling.” I do what an average person would do, would be like look around and be like, “What’s going on with me? Is there something really anxiety-provoking that’s going on? Should I be worrying about something? Is this a sign?” And then I was like, “No, no, no, I’m going to use my tools.” This happened for several days until I realized this actually could be just generalized anxiety because I do struggle sometimes with generalized anxiety, but I actually think this is a part of my POTS. So, I did some research and spoke to a doctor and yes, it is in fact a part of my POTS symptoms and it’s one that I didn’t have before. 

But the reason I’m sharing this with you today is, this is actually so common for people with chronic illnesses. If you have a chronic illness, there are these weird things that happen to your body and then it’s so easy just to chalk it up as like, “Oh, I’m having a panic attack,” or “I’m having anxiety.” And then you start panicking and having anxiety. If you’re not careful, you’ll start to do hypervigilant behaviors and avoidant behaviors and mental compulsions, and then it’s a full-blown anxiety disorder. 

Pots And Anxiety: The Dreaded Adrenaline Surge

If there’s one thing I have learned from having a chronic illness is to be so skilled with physical sensations that show up in my body because it can seem so similar to anxiety – dizziness, lightheadedness, agitation, feeling like you’re going to faint. These are all symptoms of POTS, but they’re also symptoms of anxiety. POTS and Anxiety can feel almost exactly the same. So, I’ve had to become very, very skilled. And I use the word “skilled” because this is not an innate thing I know. I had to practice what I preach and I had to be very objective, not subjective about what’s going on, and go, “Okay, you’re having dizziness. It could mean that you’re going to faint, but it also could mean you’re anxious.” So, let’s actually be really skilled in how we respond to this. Or you’re having a panic attack. In this case, you’re having a massive adrenaline surge is what they call it in the POTS world. You’re having this adrenaline surge, it could be a panic attack and it could be your POTS. Let’s work at being very logical and wise in our response to it. Let’s not be responding to it as if it’s a catastrophe or that there’s actually danger. 

This has been so key for me. What I have found, and this is literally as we speak this week and I can say to you as we speak right now, I actually am having a massive adrenaline surge as we speak. It is so easy to interpret it as something is wrong, there must be danger, we’ve got to get out of here. But I’m working at just allowing it to be there and going, “Thank you, brain, for setting off this alarm. I understand. I’m going to allow it to be there.”

The reason I’m sharing this with you and the reason I actually had scheduled to do this recording tomorrow, but today’s the perfect day to do it because I’m actually in quite a lot of suffering right now. It’s pretty painful. It’s pretty uncomfortable. I’m at like an eight 8 of 10 anxiety level, maybe even a 9 depending on where I’m at. I’m just actually going to go about my day. As I speak to you, I’m actually in a pretty big degree of suffering and I just want to be completely real with you. The reason, again, that I wanted to record this today is I was getting ready for work and I started to notice, I was putting all these black clothes on because I don’t feel so great. And I was like, “Wait a second, this is how invasive this can be in that I’m actually choosing black clothes. Not that there’s anything wrong with black clothes, but I’m choosing it because my body feels so uncomfortable. What could I do right now to fully embrace joy, fully just embrace the fact that it’s here?” 

Choosing Your Values

I have this bright, yellow dress that’s like a full circle dress. If you did a spin, it would go into a full circle and I love this skirt. I was like, you know what? I’m going to wear my yellow skirt today. Today is a perfect day to wear my yellow skirt, even though my body is having a massive reaction. My body is obviously in some kind of response to something, chronic illness-wise, and my body wants me to panic. My body wants me to be hypervigilant. My body and my brain want me to tighten up my whole body. But I’m going to put on this yellow skirt and I’m going to sit down with my friends, you guys, and I’m going to talk about this thing that I have to handle. 

As I’m sharing about this, I’m just going to pause here for a second because it brings me to tears. I’m in a lot of pain emotionally. But in that pain, if you could see me right now, I actually have a huge smile on my face because I am so grateful that I gave myself the opportunity to practice these skills because they are actually reducing how much suffering I could have. I remember when I first had these symptoms that I did go into hypervigilance and panic because I was like, “Something is seriously wrong. Something is really wrong. We have to fix it. We’ve got to go to the emergency room.” And now I have these skills to where I’m not actually increasing my suffering by doing all of those compulsive behaviors. And that is key when you have a chronic illness. 

Treatment For Pots And Anxiety (and other chronic illnesses)

All the research I have done shows that having a chronic illness requires medical attention and therapy. Cognitive behavioral therapy, I did a whole bunch of research in prep for this, a whole bunch of research. If you have POTS, they recommend cognitive behavioral therapy. That’s because along with having a chronic illness comes anxiety and depression and other emotions. Along with having other chronic illnesses comes anxiety and depression, diabetes, Crohn’s disease, celiac disease. It could be even just having a chronic illness of having a disorder. A mental health disorder also creates a lot of anxiety in your life. This is key. I’m just so grateful that I have the ability to practice these skills and the ability to just sit in the mud. I am just sitting in the mud today. That’s what I’m doing. I’m so grateful that I have those skills and I really want to teach you guys those skills by modeling to you today. So, let’s break it down. 

When you have anxiety, whether it’s in association to a chronic illness or it’s just regular anxiety, what I’m going to encourage you to do is do nothing at all. It’s actually quite easy when you think about it, but it’s actually really hard at the same time, is to do nothing at all different. Today, I am going about my day. I am going to allow my heart rate to go through my chest and beat so hard. I’m going to allow that lightheaded, blood pressure issue that I’m having to be there. I’m going to allow the dizziness to be there. I’m going to allow the raising thoughts to be there. I’m going to still show up in my yellow skirt. If I spin in a circle, it would be a full spinning circle. It would be so beautiful. And I’m going to keep my heart open. If you could see me right now, I’m not hunched up. My hands are soft, my cheeks are soft, my heart is open, my shoulders are dropped. I’m just here for it. I’m allowing it. Is it hard? Yes, it is painful as. Is it exhausting? Yes. Every night this week I’ve been going to bed at seven o’clock and just resting my body because I’m working really, really hard. And my body is exhausted because it’s pumping adrenaline all day long.

These are some ideas I want you to implement into your life if you can. And a lot of it, one thing, of course, I didn’t discuss because it’s just such a part of my practices, I’m also really gentle with myself. Like, “Yeah, Kim, this is rough.” I use the word “suffering.” You even heard me use it. “This is a lot of suffering for you right now, hun. You deserve to go to bed a little early and it’s okay if you don’t show up perfect and you might drop some balls. Yeah, that’s okay.” That’s the main point. 

Pots Awareness Month 

What I will say at the end here is please-- you’re probably hearing some of this and going, “Oh my gosh, maybe I have POTS.” I really want to make sure you know the difference. Given that it’s POTS Awareness Month, postural orthostatic tachycardic syndrome is not an anxiety disorder. It is a disorder of the autonomic nervous system. It does mean that when you stand up, there is changes in your heart rate and in your blood pressure that cause you to faint. Lots of people with POTS can’t stand up at all. So, I’m so grateful for the fact that I can stand up, even though it takes me two goes to fill up a drink bottle. I can stand up better than a lot of people who have postural orthostatic tachycardic syndrome. I can walk. I can exercise. I’ve been building up my exercise routine according to the POTS exercise program. 

Difference Between Anxiety And Pots 

It’s important for you to understand that just having these anxiety symptoms doesn’t mean you have POTS. If you are fainting and you are actually having a really difficult time with nausea and multiple different autonomic nervous system issues, well then definitely go see your doctor and share with them your symptoms. If they think that you are a candidate for maybe getting tested for POTS, the type of test you would need is called a tilt table test. It is usually administered by a cardiologist or a cardiologist nurse. It’s a horrible test, and if you have POTS, it will be very painful and very difficult. But basically, it’s where they put you on a table and then the table tilts up really fast, and then you’re connected to all these cardio nodes, I guess, all over your body and they’re got a blood pressure machine and some people even faint during the test. They raise you and then they drop you down flat and then they raise you and they drop you down flat and they’re monitoring whether there’s shifts in your heart rate and blood pressure. And that is the test that will get you diagnosed for POTS based on whether you meet criteria. It’s a very unpleasant test if you have POTS because it does induce fainting for a lot of people or a severe amount of nausea for a lot of people. But if you are concerned, you can reach out to your doctor and see if you meet the criteria to get that test. 

That’s it. I wanted to share with you what it’s like to have POTS and to share my ups and downs with having POTS. Also, one thing I will say, if you don’t mind and you want to stay with me just for a few more minutes, is having a chronic illness is also a very anxious experience. You never know whether you’re going to have a good day or a bad day. You never know what your symptoms are going to be. For me, I’ve actually been very blessed and the treatments have helped me a lot. For some people they don’t, but for some people, they can’t guarantee they can show up for work tomorrow. They can’t guarantee they can take their kids to the park. They just don’t know. It depends on the day and it depends on their body. So, there’s so much uncertainty with what your body will do and how your body will react. That in and of itself creates a lot of anxiety and uncertainty and it can be very, very depressing. 

For those of you who have severe POTS, they can’t play with their kids. They can’t stand up long enough to run in the park. It can be very, very debilitating. So, if you have a chronic illness and you have anxiety and depression, that doesn’t mean there’s something wrong with you. It actually means it’s a normal natural part of having a chronic illness. I wanted to really make sure I advocated for that because some people think if you have a medical problem, it’s just a medical problem. But often medical problems create mental health problems and we have to look at the whole human. Even though I’m an OCD and Anxiety Specialist, I’m still going to admit to you guys, it still creates anxiety for me. I handle it pretty well, but some days I don’t. Some days I’m very sad about it and have a lot of grief and a lot of anger and a lot of frustration around it and sometimes even jealousy. Just jealous. I wish I could A, B, and C.

I’ll tell you one story. There’s a person on social media and they constantly do their posts while they’re standing at a computer desk. Even just looking at her stand at a computer desk, she’s got one of those standing desks, I have so much envy because I’m like, “I could never ever do that.” Never ever do that unless somebody-- I don’t know. I didn’t even know how I would do it, but-- yeah, a lot of emotions show up. 

All right. So, that’s it for today. I wanted to share with you a whole little update on what happens when your chronic illness causes anxiety. I wanted to highlight that it’s Postural Orthostatic Tachycardic Syndrome Week or Awareness Week. Actually, I think it’s Awareness Month. I hopefully inspired you to lean into your fear and not give it all the power because you’re actually stronger than your anxiety. 

All right. Thank you so much for listening. I know it may have been a bit of a rambling episode, but hopefully, you took a few pieces away from it. I really, really appreciate you checking in. Please do go and leave a review. It is the best gift you can give me because it does allow me to then get trust of other people who are new coming to the podcast, and then we can help some more people. 

Take care and I will talk to you soon.