Disclaimer: These posts are speaking from my personal experience and I’m trying to outline what has worked for me. I know everyone’s cases are different, so I want to respect that, and say up front that I know my methods my not work for others. By no means am I looking to push my experience as the only way that can work for people, nor am I trying to say that anyone is wrong or weak for not pushing through! I have tremendous respect for everyone fighting through POTS, and I am only looking to inject some more strength, resilience, knowledge, and positivity into an already incredible community. I’m also just looking to share my story and connect with others. So, thank you for reading today, and know that you are amazing, and I wish you the best on your personal journey!
In the summer of 2017, a year after being diagnosed with POTS, I was fortunate enough to attend the 2-day Pediatric Pain Rehabilitation Program at Mayo Clinic. My brother and sister had already attended the 30-day program, so I knew about Mayo’s principles and approach going into my visit. Even still, those 2 days were life-changing, and I use the lessons I learned two years ago on a daily basis today. Mayo attacks POTS with a non-pharmacological approach and opts to use the power of the mind and body over the power of drugs. It’s worked wonders for me.
Here are five of the most transformative things I learned at Mayo and some practical tips on how you can apply them to your own life.
Fake it Til You Make it
After a year of POTS controlling my body and mind, I realized I needed to live my life, chase my goals, and be myself, no matter what I was going through. Mayo gave me a science-backed approach to living well despite symptoms: “Fake it til you make it.” This means setting goals and sticking to them. It means committing to events and attending. Holding yourself accountable. It means ignoring your pain and telling yourself that you are healthy and happy, no matter how you feel. And when you keep doing this, for an extended period of time, something incredible happens. The self-fulfilling prophecy begins to work. There is science behind it — when you convince yourself that you are pain-free, your brain literally forms new neural pathways that tell your body you are not in pain anymore.
If you get your family and friends to support you and stop asking how you are feeling, you can start going through an entire day just living life. Not thinking about POTS. This is not a magical approach, and it won’t make your POTS disappear. But all of the medication and exercise and nutrition in the world will not make a true impact on your life if your mindset is still one of being a “sick person.” If you can start with the right mindset and focus solely on where you want to be and how you’re going to get there, your mind will help you get there. The mind will do all it can. It worked for me.
Once you establish the right mindset, everything else can fall in to place. You can add in a schedule and exercise and meditation and proper nutrition and socialization and whatever else you want to, and you start getting better day by day. Learning this was tough. At Mayo, they fully acknowledged that people with POTS are in intense pain. However, they said we need to forget that. In the program, we had to attend the social events and be on time for our group sessions, physical training, and anything else we had scheduled. If we didn’t show up, we were kicked out. That’s how important it was in the program’s eyes. The amazing thing: there was almost no one who dropped out, and all of these kids who came in with so many limitations were living without limits by the time they left.
If you can let go of your limits, your mind and body will find a way to do what they need to do to get you to where you need to be.
Set and Stick to a Schedule
Learning about faking it til I made it was great, but I wondered what I was supposed to do all day when my current daily schedule was based on reacting to how I felt. Mayo’s answer to that dilemma was to set a schedule and stick to it.
How can one do that? Goal setting comes first. Some of my goals were to be back in school full time, exercise 6 days a week, meditate daily, and socialize on weekends. Those might seem ambitious, but my strategy was to go all in on life and take extreme ownership of my reality. It’s not like I was doing anything my body was too unfamiliar with anyway — attending school, exercising, and socializing were all things I had done for most of my life. The way I looked at it, I was going to get back to being a normal person again, with the additions of a meditation practice and a strict exercise routine.
So, I set a schedule. I went to bed at the same time every night and woke up at the same time every morning. I would go to school, put on a smile, and focus on seeing my friends and getting my work done. After school, I grabbed a snack and went right to the gym, six days a week. It became easy for me — I didn’t even have time to think about my pain or my problems because I was too busy following the plan on my schedule. I was able to “automate” the first 10 or so hours of my day, which led to me focusing on getting one thing done at a time. Then I would move on to what was next up.
I made plans to hang out with people well in advance, so when the time came, I always left the house and went out no matter how I was feeling. My family held me accountable too. I went to church, watched my siblings play in their sporting events, and attended family gatherings. I made my focus external, on my goals, instead of internal, on my problems. By setting my schedule ahead of time and always sticking to it, I ensured myself that I would live out my goals no matter what, and my life became easier and easier over time.
Keep a Healthy Balance
Now, you might be thinking, no matter what you tell your brain, it’s really difficult to live your life normally if you are fainting or vomiting while you are trying to stick to your schedule. You might be saying, “that’s what happens to me, and so there’s no way I can do everything he’s talking about.” I understand that feeling, and I know applying these principles may seem monumental or insurmountable.
I know people who came into Mayo’s program fainting and vomiting dozens of times per day. However, I know those same people were able to live unaffected by their symptoms in just days after starting the program.
It seems crazy, but here’s how they did it: they applied a fake it til you make it attitude, and pushed themselves to follow a schedule, while always being mindful of not pushing their body too far.
The key here is keeping a healthy balance. Personally, I knew that pushing my body too far physically could trigger a crash or an intense bout of symptoms. Spending too much time on academic work or in an intense social setting could do that too. When talking about “too far”, I’m not talking about being uncomfortable. As Mayo said, you have to push yourself outside your comfort zone to make a change. But pushing yourself too far is not a good plan either. You have to find that balance.
My way of doing that was through planning breaks ahead of time around long or strenuous events in my schedule. For example, in school, I would periodically leave class to take a walk through the hallway and I would sit down to clear my mind. Going further, if my friends wanted to play one more sports game or wanted me to stay out an hour longer, I often had to say no to ensure I kept my body in a healthy balance.
Over time, I looked at balance as a principle for not only limiting my time in activities but also to hold me accountable so that I was spending enough time doing them. Balance was a foundational belief that kept me exercising, socializing, and working through problems. Too little and too much were both bad for my overall wellness — I realized it is best to use moderation and balance for everything in life, and making sure I do what I want and love without overextending myself has been a key to thriving with POTS.
Sleep is the Foundation of a Healthy Life
Sleep can be both a major issue and a major refuge for people with POTS. So many POTSies are tired, and this can is often due to poor sleep hygiene; either too little or too much. At Mayo, we learned sleep is the foundation of our health. If we don’t get sleep right, they said, it doesn’t matter what else we do — there won’t be much positive change in our health and well-being.
It’s like trying to build a house. It doesn’t matter how hard you work or what materials you have — if you don’t have a proper foundation, you can’t build a house. Or, you’ll be can build a house, but it will probably fall apart rather quickly.
To build the best night’s sleep, you can start with going to bed and waking up at the same time, every day. It’s that simple. If you have trouble falling asleep, you should still turn your lights out at the same time every night. Over time, your body’s circadian rhythm will adapt to this new sleep schedule and you’ll have an easier time falling asleep. Better yet, you’ll start to feel refreshed and ready to attack the day after waking up.
Again, Mayo’s recommendation was to sleep at the same time, every day. We were strictly forbidden from sleepovers for six months after the program. I was completely against this at first but was later grateful because I realized how I never lost control of my sleep schedule.
At times, it meant leaving social events early or going to bed when I didn’t want to. Sometimes it meant waking up with an alarm on a day when I really wanted to sleep in. But a consistent sleep schedule helps to set a consistent overall schedule, and waking up and going right into a morning routine on a daily basis transformed the way I attacked my days — with more energy, positivity, and discipline.
For anyone who has difficulty sleeping, there is a wealth of information online about how to get better sleep. For starters, Mayo forbade devices in the bedroom and said no to naps. I am in favor of cutting out naps because I believe one shouldn’t have time for naps if they’re following a schedule, and naps are often something someone does when they feel tired or don’t have anything to do.
Tell your body who the boss is and keep it on a strict schedule. Work yourself hard during the day and you’ll sleep well at night. Apart from those tips, keeping your room dark, getting more sunlight during the day, exercising in the morning, and cutting out caffeine can all make big differences in the quality of your sleep. If you want to read from what’s currently considered the Bible of improving sleep quality, the book Sleep Smarter is the best out there right now.
Mayo preached the power of sleep at the program, and my personal experience and research have only led me to confirm my belief. Sleep is the most important thing for your health and it is the foundational piece for building a healthier mind, body, and spirit.
Socialization is Key for Thriving with POTS
Mayo emphasized the importance of socialization for living a healthy and happy life. Everything we did on a daily basis was done in groups. It was inspiring for me to meet other people my age who were going through the same things I was, and we all held each other accountable and pushed through our pain together. We didn’t talk about our pain at all, or how we were struggling, and it was refreshing. It was normal. It was joyful.
Just like exercise or sleep, Mayo highlighted the importance of scheduling in socialization ahead of time and then sticking to your plan. While getting out can seem like too much effort at times, it is often one of the best ways to distract you from your pain. Making an effort to spend time with people you love can be one of the best investments you can make.
Get out and do it. If there’s one takeaway you get from this article, I hope it’s that it is possible and also important to do the things you love with the people you love. Do the best you can to take a little more control of your body every day. Eventually, with the right mindset, schedule, balance, and habits, you’ll look back and be amazed at how far you’ve come.
Let me know in the comments: what principles have you learned or picked up that have improved your quality of life? I would love to hear about what’s helped you, as would everyone else reading this post!
Thank you as always for reading and, if you want to be a superhero, please be sure to spread this post and the word of POTS positivity with your family, friends, and social media. I appreciate the feedback and support immensely, and you never know who you can help when you share a story! You can also reach out to me through the “Contact” section at the top — I am always looking to answer questions or provide support in any way I can. Thank you again for reading.
Let’s keep making POTS a positive!