Project POTS · Jul 01, 2021

PROJECT POTS - Episode 8: Dysautonomia Awareness Month - Postural Orthostatic Tachycardia Syndrome

EPISODE 8

Dysautonomia Awareness Month - Postural Orthostatic Tachycardia Syndrome

Hello NormaLyte community and welcome back to another episode of Project POTS!

This week I want to talk about this at Dysautonomia Awareness Month. For those of you that don't know, Dysautonomia awareness month is in October. It's a month where we celebrate our successes as a community, as individuals, continue to advocate for ourselves, and raise awareness for Dysautonomia.

You may have seen a lot of turquoise going around. That's kind of one of our phrases 'Make noise for turquoise' to raise awareness that we are here and that disorders like POTS exist.

We're very lucky that we've had some pretty cool buildings lined up in turquoise in these past couple of weeks but I really want to just take this time to have everyone kind of celebrate themselves.

I know it sounds a little strange to think about celebrating your sickness but when you think back to when you were diagnosed, and I think this is true for most people, we've all come a very long way.

When I think back to my own story, you know just getting diagnosed, just getting someone to believe in me in the first place was a struggle, and then after I got diagnosed it was adjusting to this new lifestyle, adjusting mentally to the concept of 'Here I am and I have a chronic illness'.

It's a very difficult process and finding the right kind of treatment protocol that works for you can take a lot of different forms; can take a lot of different trial and error.

I'm very lucky that I'm at the point where I am able to function as a college student but my POTS is by no means cured or gone. I still have days where I blackout, I still have days where I have to cancel, you know, especially in the summer or when it's really hot. It's very difficult, but I kind of take Dysautonomia awareness month to celebrate how far I've come and to focus on the strengths that I've gathered from my experience with POTS rather than, you know, the fact that I live with POTS.

Having POTS has made me stronger, it's made me more empathetic, it's made me a better advocate for myself & others.

It's helped me to find my passion. I truly love helping other people, especially within the realm of chronic illness and POTS, and that's why I do these videos because I want everyone out there to know that it can get better and that living with POTS doesn't have to necessarily be a shameful thing or this all consuming thing.

You can still live your life and you can still have your successes and you can still fight for your rights and your awareness and make the world a better place for the next generation and then also fight for treatment, fight for research.

There's just so many different ways that I think having awareness months are super beneficial and just really great on a community and at an individual level. So I know Dysautonomia Awareness Month is coming to a close but I'd love to hear what you guys did this month to celebrate, or to raise awareness, or to advocate for yourself and if you haven't done anything then I hope you take a moment just to be proud of yourself.

You're here, you are living with POTS and you are a warrior. You have come so far on your journey whether you were diagnosed yesterday or years ago you are just doing incredible and that's the point of this month; to recognize how strong, incredible, and brave all of us are for fighting POTS. For fighting for our next generation.

So I hope everyone had a great month and I will see you all next week.