An Interview with Ella Eastin, American Swimmer: Part 2
Click here to read part one of our interview with Ella.
I have a lot to say! To start, my journey to diagnosis included connecting with people that I knew also have experience with POTS/other chronic illnesses. I do think it’s actually pretty common for people with forms of disorder, to somehow reach an unofficial diagnosis either through someone that they know or through their own research. Which, you know, I think is a reflection of the lack of support and infrastructure in healthcare right now to help these patients. It’s unfortunate, but that's the reality. So as a person navigating this, it can be really, really hard, but because I have a friend who went through this illness and was a swimmer with a physician mother, she unofficially diagnosed me over the phone. After that, I could make steps towards seeing other physicians that I could eventually get a diagnosis with.
Immediately I realized how incredibly important a support system is in reaching a diagnosis, but also after that diagnosis and the overwhelm that comes with not knowing what's going to happen, what's progress going to look like––all of these things. Before I started medical school, I wanted to create a platform where patients, family members, and physicians could share their experiences with each other to raise awareness and be able to learn from each other. I actually one day asked my Instagram followers after I had announced my retirement from swimming and made my POTS diagnosis public if this was something they would want and immediately recognized that there were thousands and thousands of people that were so happy to know that someone else was through this.
You’d never wish a chronic illness upon your worst enemy, but at the same time, there’s so much gratitude when you meet someone else that is experiencing the same thing. One day I asked my audience what one word they would use to describe what living with a chronic or invisible illness is like, and the number one answer was misunderstood. From there, I created a platform called Dysunderstood.
We have a community and a bunch of stories now of individuals that share their journey to diagnosis, how they've been managing it, and things that have been important to them like advice that they want to share. It's been a really really fulfilling and therapeutic experience. Every single person that has written out their story has shared with me that it has helped them heal emotionally in some way from everything that they have gone through. It can also bring up some really hard emotions that they may have been you know trying to avoid. Sometimes it's just easier to get through the day if you don't face really hard emotions, right?
I encourage anyone that is managing these conditions to seek some sort of support. The fantastic thing about technology now is that we can access people on the other side of the world that are navigating some of these similar experiences. Dysunderstood just had our first international author share a couple of weeks ago and it's amazing that she’s from the UK!
She and I were living very parallel lives at one point and it's been really really cool to connect with others and also see that people are willing to spend the little energy that they have with chronic illness to write down their story (or speak their story) because I also have the audio available for accessibility purposes. The amount of support that I've received, but also that's been fostered between others has been really, really cool to see. It's kept me really grounded.
What an amazing way to have an outlet outside of figuring out “what happening with myself” and turning it into, “how can I make an impact?” So, how can people either connect with Dysunderstood, join, or be part of the community? Where can we lead them to be part of your community?
Absolutely! So, first, our Instagram page is @dysunderstood which you can follow for updates. We're always accepting stories and if someone feels inclined to share, they can send a message or go to our website: www.dysunderstood.com
I'm always happy to connect with people that are wanting to get connected and share their experiences. As the platform grows, there are going to be some changes soon and I'll be releasing merchandise to help support the platform.
That's amazing. I'll definitely be watching and seeing the ways that I can support for sure! A couple of ending questions…
So, my first one, it's more of a general one. You've shared a lot of wonderful background about who you are, what you're passionate about, and the things that you've gone through. For anyone that's listening, what is one piece of advice, whether listeners have an invisible illness, maybe they work in health care, or perhaps they're an athlete; what is one piece of advice that you'd say to somebody that has maybe gone through the same path as you?
I actually have something that I try to keep at the forefront of my heart and in my mind every single day. I think that so many people now, with the hustle and bustle of the world, put so many expectations on themselves to be productive and be perfect and do all the things. I actually came home one day from just a grocery store run, which at the time during the pandemic was hard for me to do, and I often did not do it by myself. I usually went with my mom to make sure that, you know, everything was okay and that was my activity for the day; that was what I was able to handle. It was really challenging to navigate going from being a professional athlete and student at the same time to now barely being able to do a single daily task.
I learned to slow down. I'm still not perfect at it, but my mom, when I came home, she said, “I found this for you and I thought that it would be really nice to put it in your room as a reminder.” It’s a sign in my room that says let whatever you do today be enough and I think it’s been a really great reminder that rest is also productive. As I've navigated this really challenging time in my life, it’s also been a great reminder to stay content even when the days don't go like I'd like them to.
Let what you do today be enough––I think we should end it on that note. What a beautiful way to capture everything. I’m definitely very touched by your story and very happy that you wanted to share it with Gales and our audience. Thank you for joining!
Thank you so much!