When Life Gives You Lyme

Emily von Weise
Emily von Weise
March 8, 2022·2 min read

~ A Guava Patient Story ~
Emily von Weise discusses her Lyme diagnosis journey and Guava

A little over a year ago I stopped working to finally focus on finding a diagnosis for the debilitating mystery illness I’d been dealing with for ages.

After dozens of disheartening doctors visits, hundreds of vials of blood drawn, and hours on the phone with specialists across the US, I finally found a doctor in March 2021 who listened. 10 years after my first symptom appeared, I finally had three diagnoses, all of which were chronic tickborne illnesses.

I started a complicated treatment plan and sat in bed while battling chemo-like side effects for months. In a society where so much of our identity is tied to our careers, I felt like I’d been stripped of everything.

Lying in bed, I reflected on all that was wrong with my diagnosis journey — the doctors who gaslit me, specialists who refused to listen to my symptoms, and the same three tests being reordered by every doctor I saw (Meghan O’rourke chronicles her journey of trying to get diagnosed with the same illnesses much more eloquently in her new book, "The Invisible Kingdom" -- featured in The New York Times, The Wall Street Journal, and NPR). I decided I needed to focus what little energy I had on making sure others didn’t experience the same expensive and emotionally exhausting diagnosis journey.

I’m hoping the tool I helped create with Guava Health will do just that.

Guava is an incredible patient-centric health app that centralizes all of your health data by connecting to patient portals, pulling documents from all of your providers, and synthesizing all of that information so it’s accessible and understandable. As someone who has seen upwards of 15 doctors, Guava is a lifesaver.

Along with consolidating and keeping health records up to date, Guava allows you to log habits that factor into overall health and wellness, like foods you’ve eaten, activity level, and medication logging. On top of that, Guava can now track symptoms.

This new tool is huge. It took a doctor (out of network of course) sitting down for three hours to go over every symptom I’ve ever had for me to finally reach a diagnosis. If I’d been able to track my symptoms like this five years ago (rather than just jotting down on my notes app whenever I felt pain), and easily share them in the normal 15 minutes most doctors allot for appointments, I’m confident I would’ve reached my diagnosis sooner.

Guava gives patients the power to advocate for themselves and be heard in a medical world that can be scary and hard to navigate. All information on Guava can be shared with any of my doctors with the tap of a button, ensuring all my providers have my complete medical record where they can see updating records from my other providers. This improves my overall care, reduces duplicative testing, and allows my doctors to work better as a team.

Although my treatments still keep me in bed many days, and I likely won’t be able to work a full-time job until my treatment is over in a few years, I’m grateful to know that I have the ability to use my difficult journey to make a positive impact.

And a reminder that everybody’s post-grad career timeline is unique — you’re never in the “wrong” place, and just because you may not be doing what you always envisioned you’d be doing doesn’t mean you’re behind!

P.S. If you’re like me, or know someone like me, I encourage you to try out Guava. The team is great and always looking for feedback and ways to improve the experience. If you have any questions, let me know! Otherwise, head over to Guava to try it out for yourself!

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