1. Do you have a primary diagnosis, if so, what is it?
A: Chronic Lyme Disease
2. How long did it take you to get diagnosed?
A: 8 years from when symptoms really began to present themselves/interfere with life and I truly started looking for answers
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I was relieved, I finally had an answer for all of my suffering and there was finally a doctor who believed me and was going to try to help me! The first thing I did was thank my doctor, go home, and organize all the information and medications they gave me. I wanted to start treatment immediately!
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Do not give up looking for answers or searching for a doctor who believes you/can help. If you know something is wrong, keep fighting! I had health issues for YEARS and everyone told me I was fine, but I knew deep down something was wrong.
5. Has your chronic illness changed your perspective, and if so, how?
A: Yes! It’s changed my perspective on what is important in life, how important I am (I come first, I have to take care of myself and put myself first in order to be there for others), and how I view life. I spent almost my entire life up until I got sick (and still for several years into my illness) following and believing in the “traditional life” (school, work, work harder, go-go-go mentality). Once I got sick, I realized how skewed our cultures perspective on success is. Success is so much more than just getting the perfect job and making lots of money. Success doesn’t have to necessarily do with that at all. Getting sick changed my perspective on what taking care of yourself means, on what happiness can be comprised of, and on what success in life entails.
6. What moment are you most proud of in your chronic illness journey thus far?
A: Honestly, surviving. That may sound dark, but it’s true. I’ve been through a lot with how sick I’ve been and I’ve also been through really intense treatments. My dad always tells me he’s amazed and proud of me for pushing through all of the BS of illness and for surviving and I am too. Some days I can’t believe what I’ve gone through.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: I actually think the lowest moment was when I relapsed the 2nd time. I didn’t have all the symptoms I had when I first got REALLY sick, but the few I had were more severe than I had ever experienced. It was terrifying because I didn’t know why I was feeling so bad despite doing treatment. I’ve had several extremely challenging low moments throughout my illness. Times were it really felt like there was no possible way I could keep going…
8. What or who has helped you the most during the lowest days?
A: The friends I’ve made in the chronic illness community. I have a few very close ones who I know I can talk to when things are bad. They understand what I’m going through and I can just vent without judgement or having to explain myself.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: I have 3 “words” of advice- Find your support network, don’t be afraid to reach out, and always listen to your gut. Your support team may not be all your old friends or even your family. You may have to seek out a new network (like chronic illness friends on social media) who accept you and understand you and want to be there for you. Many people lose old friends and family when they fall ill because those people don’t understand. That can be hard, but it doesn’t mean you can’t find new people who become like family. The second is don’t be afraid to reach out and ask for help when you need it. Becoming ill is scary and challenging and exhausting and you can’t do it alone. It’s hard to ask for help, but it’s insanely valuable. The last important thing is to always listen to your gut, especially with Lyme disease. It’s a diagnosis that many doctors still don’t understand and treatments are fairly experimental (even if you are working with a doctor who has a lot of experience treating Lyme), so always listen to your gut when it comes to what you feel is right for your body. Your body knows what it needs to heal and it will tell you if you listen. Take care of yourself the best you can first (diet, self-care, etc), then listen closely to what other therapies or treatment your body may be asking for to help you heal.
10. What would you like the world to know about life as a chronic illness patient?
A: I want the world to know that being a chronic illness patient is NOT EASY! We aren’t lying or exaggerating. We don’t enjoy being sick and laying around in bed all day. Trust me, if we could be on our feet working full time, we’d much rather be doing that. We aren’t “lucky” that we don’t get to work or that we have to sleep all day. Our stories are real, our symptoms are real. It can be hard to understand or believe that someone can feel as awful as we do and have as many symptoms as we do, it blows our minds as well, but we aren’t making it up. If you are frustrated with how we feel, imagine our frustration!
By Victoria ] @lemonsnlyme