Welcome back to another More Than Lyme Feature! This week we'll be talking to Hannah, who as of not long ago, was diagnosed with late stage Chronic Lyme. With only one year of college left, ambition and drive to last a life time, and a plan for the future that always kept her moving forward; the diagnoses of Lyme had a heavy impact on her life. Everything had to be put on hold; the activities that once pushed and motivated her, were no longer part of her day-to-day. Everything had changed, except for one thing: Hannah's attitude. There is no doubt in my mind that she will get her college degree, that she will reach all of her dreams and goals, and that she will feel like herself again - all while being more than Lyme.
This is her story...
Q: Letting go. In the process of being diagnosed with Lyme Disease, what things have you had to sacrifice and let go of? And how do you cope and adjust to this new way of life?
Hannah: Having a chronic disease means leading a double life. I have my “normal” life, filled with going out with friends, running to class, and indulging in pizza. Then I have my “Lyme life,” which consists of juggling dozens of doctor appointments, scrambling to refill prescriptions, and spending hours in bed. Yet leading both of these lives is impossible. Something has to give. I had to compromise my academic career – something that has been a primary focus in my life for years. Succeeding in school is what drives me; I always want to learn more and do better in the process. My high expectations for myself have been shattered since being diagnosed with Lyme disease.
Lyme disease has forced me to get over my FOMO, or Fear Of Missing Out, because my body can’t handle it. But my friends spend time with me in other ways besides heading out to a bar or venturing to concerts. We watch a lot of movies and talk for hours. I’m also able to stay connected with my friends in Washington, D.C. (where I go to school) thanks to Skype and unlimited texting.
I’ve sacrificed my busy lifestyle. I’m typically an avid exerciser, working out six times a week. I love to swim, play tennis, and do hot yoga. My body can’t handle the activity anymore. These days, I’m lucky if I can walk around the block. But, I keep trying. My “normal” schedule is constantly jam-packed and now it’s practically empty. I don’t do well when I’m not busy so I’ve struggled to find ways to pass the time. I’m learning to slow down, which has been one of the hardest parts of being sick. I’m still in search of ways to feel constructive and positive.
When I was first diagnosed, I was determined to create a treatment plan. Many Lymies probably laugh at the thought because, as I’ve come to learn, there is no planning when it comes to chronic Lyme disease. There is no standard treatment or predicted duration of the disease.
Every day is unpredictable. I have to remind myself that I cannot control my body, only nurture it. I appreciate the little victories. I’m starting to value my health above my accomplishments. I cope by reminding myself that while Lyme disease is debilitating, the experience is teaching me invaluable life lessons.
Q: Following your passion. What activities do you do for yourself that help feed your mind and body? And how do these activities help you stay motivated through the good and the bad?
Hannah: Being sick has made me a homebody, often bedridden and unable to read, write, or focus. I try to read whenever I can, but it’s not always possible. I’ve had to find other ways to keep my mind active, such as listening to podcasts. This helps me feel productive even on the days when my body is rebelling.
I’ve begun to paint again, a pastime I used to do as a young girl. It’s very soothing because I put on some relaxing music and allow myself to get lost in the process. Plus, when I’m finished, I have proof that I’m still able to create something beautiful despite the ugliness of this disease. My cabin on Lake Vermilion is my favorite place in the world. When I’m there, I’m surround by the sereneness of nature. I was born and raised in the Land of 10,000 Lakes, so water has always been a part of my environment. I’m addicted to the calming effect that water has on me. So, I try to escape to my cabin whenever possible.
I recently started my blog at lymebyhannah.com to share my experiences with my loved ones and interested Lymies. Writing has always been my expression of choice. I’ve often felt the urge to write, but I didn’t know exactly what to say. Now, I have a story to tell.
Q: Being mindful of what you think. Negative thoughts can be overwhelming and difficult to keep in check--what are some of the positive thoughts you focus on when you're feeling down?
Hannah: The negative thoughts have been equally as difficult to fight as the toxins in my body. It’s tough enough with the tremendous pressure society places on young adults, and having a chronic disease only makes it harder to stay positive.
I cry, A LOT. Crying can be therapeutic when I’ve kept my emotions bottled up for too long. I’ve learned to not be ashamed to cry, even if I’m in my doctors office. I also go to therapy to learn ways I can fend off the negativity. Hiding my emotions is draining and I’m already tired enough.
I have an amazing support system that encourages me to keep going. They help me battle the negative thoughts with their smiles, hugs, and kind words. Nobody can go through this alone. When people ask me, “How do you do it?” my response is usually, “There’s no way to do it but to do it.” It’s going to suck but I have no other option. If I want to regain my health, I have to do whatever it takes to stay hopeful and make it through.
Ultimately, I refer to one of my favorite quotes by Nayyirah Waheed: “Be easy. Take your time. You are coming home to yourself.” Lyme disease has taught me to slow down and be aware of my body and mind. I am slowly discovering the person I am meant to be, and chronic Lyme disease is helping me do that.
Q: Someone to lean on. Asking for help can be hard, especially when you're suffering from Chronic Lyme--simple tasks often become difficult and you are forced to look to others for support. Tell us about your community, who they are, and how they help you and challenge you to keep fighting.
Hannah: My family has gone above and beyond the call. They are my biggest fans, celebrating every success and easing every failure. My parents and sister are willing to drop everything to help me up the stairs or get me more water. It’s the little tasks like these that become difficult, but my family is always there for me. Also, my dogs are amazing cuddle buddies. My doctor said they are “great spiritual energy” and I wholeheartedly agree.
My friends, in Minnesota and DC and everywhere in between, have supported me in countless ways. Some have offered to make me meals, Skype with me for hours on a Saturday night, or stay in to watch Disney Channel original movies with me. I have endless gratitude for these friends. I’ve also connected with other Lymies through social media. My friends on Instagram and Twitter can relate to me more than most. It’s reassuring to see that I’m not the only one suffering. Seeing them on their good days gives me hope.
Overall, my community has become accustomed to my bad days. It doesn’t phase them if I’m too tired to leave my house. They are willing to adapt to my needs. I count on them to get through the day, and they count on me to keep fighting.