My Life with POTS: The Unexpected Lessons I’ve Learned
Being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) was both the answers I needed while also being completely unexpected. I went through countless tests, lung function tests, anxiety medications, random blood tests - all with the “normal” outcome. It wasn’t until one doctor finally realised I shouldn’t be that out of breath at 25 that I got referred to a tilt table test. And thats where it all began… 10 years after I first started experiencing symptoms. But through everything, I’ve learned some unexpected lessons—ones that have transformed not only my health but also my mindset and way of life.
1. Your Body Is Always Communicating With You
For years, I ignored the subtle (and not-so-subtle) signals my body was sending me. I pushed through exhaustion, ignored dizziness, and tried to keep up with a ‘normal’ lifestyle. I kept trying to exercise through the endless shortness of breath assuming I was just unfit. I would go until I couldn’t feel my limbs and take a short break to get better. But the more I pushed, the worse it got. It wasn’t until after my diagnosis that I was able to put the “why” to my symptoms and started tuning in to my body’s needs—whether that means drinking more water, increasing my salt intake, or resting. Noticing the signs ahead of time helped me to decide if I need to increase electrolytes that day, take it slow or be prepared for a potential flare.
2. Self-Advocacy is Your Superpower
Doctors don’t always have all the answers, and that’s okay. One of the biggest lessons I learned is that I have to advocate for myself. Doing my own research, asking the right questions, and finding a doctor who truly listens have been game-changers in my healing. Standing up for what is happening in my body is the most crucial skill, they don’t live in this body, I do. I also don’t just stick to one doctor, I see a variety of different practitioners (Chinese medicine, naturopath, cardiologist, etc.)
3. Rest is Not a Luxury, It’s a Necessity
Society glorifies being busy, but with POTS, burnout isn’t an option. I used to feel guilty for needing extra rest, but now I embrace it. In the society that pushes this “go, go, go” lifestyle, really taking time to slow down and be in the moment and resting has been a LIFE CHANGER. And while we are on the subject of rest, the king of rest… SLEEP. My biggest game changer was consistently going to sleep and waking up around the same time (or within 30 minutes of the schedule before - i.e. go to bed around 10:30-11 and wake up at 7:30-8). This has helped to regulate the hormones related to waking up and stress and ensures good, restful sleep.
4. Support is Everything
Chronic illness can feel isolating, but finding a community of others who understand makes a world of difference. Creating a community of others that can understand what day you are having or give you the space to be can actually encourage you to do what is best for you. Sharing the day in and day out struggles with at least 2 people closest to you is so important. I don’t personally join the online groups for others with POTS. In the past I would get too sucked into minor details and personally want to surround myself with positive uplifting language and not focus on my symptoms (but these can be incredibly useful spaces to feel seen - it is just my personal preference).
5. Healing is Not Linear
There are good days and bad days. Healing doesn’t happen overnight, and sometimes, progress is measured in small victories—like being able to stand a little longer or feeling less fatigued than the day before. I’ve learned to celebrate every small step forward. Sometimes, when I have the bad days in between some good, I remind myself that this isn’t a TOTAL setback, it is temporary. It is still an upward trajectory - the more I learn about my body and what it needs, the better I get, and that takes time.
If you’re on this journey, know that you’re not alone. POTS is challenging, but it also teaches resilience, self-care, and patience. What’s the biggest lesson you’ve learned from your chronic illness journey?
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