1. Do you have a primary diagnosis, if so, what is it?
A: Late-stage neurological Lyme Disease, Dysautonomia, MCAS
2. How long did it take you to get diagnosed?
A: 4 months from start of relapse
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: My story is a little different. I was first diagnosed with Lyme as a child, but it took months for me to realize what was happening when I relapsed. I felt relief when my doctor diagnosed me (again) and also motivated to tackle this thing!
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Don’t lose hope! You will eventually find an answer as long as you keep looking and fighting for one. Have faith in yourself and in your doctors. Most importantly – remember that your battle is just as valid as others’. A diagnosis doesn’t change whether or not your symptoms are real.
5. Has your chronic illness changed your perspective, and if so, how?
A: Yes! It sounds cliché but I’ve really learned to appreciate the little things. I’d take being able to exercise or get outside for granted before I relapsed. Now I find such joy from just the rays of the sun on my face!
6. What moment are you most proud of in your chronic illness journey thus far?
A: In terms of something I’ve accomplished while ill – definitely managing to finish my doctorate in physical therapy! In terms of things directly related to managing my healthcare – being in charge of my own port care!
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: The entire period of time I spent studying for my board exam for physical therapy was definitely my lowest. I was so depleted my mom would ask what I wanted for breakfast and I’d just cry because I couldn’t figure out the right response. I couldn’t use my phone most days I studied because it hurt my brain to look at my screen or compose a text. I pushed myself to my physical, mental, and emotional limits.
8. What or who has helped you the most during the lowest days?
A: A few things! The biggest thing I do is try my hardest to be gentle to myself. With chronic illness, we often feel inadequate or like a burden because we can’t do things others can, so I try to allow myself the time and space to rest and recover as needed without guilt. I find one thing – even a super teenie tiny thing – to be positive about. It can be anything as big as walking my dog to as small as being able to sit up to eat.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: DETOX and keep searching until you find something that works for you! Lyme disease is incredibly complicated. Treatments that work for others, may not work for you.
10. What would you like the world to know about life as a chronic illness patient?
A: That we may have different limitations, medical devices, or tubes, but we’re still PEOPLE! A lot of people seem to forget that there’s still a person separate from the patient.