"Lyme is a big part of my life, and while I'm not ashamed of that, I also want people to know that there is more to me than my illness." - Hailey Allen
Hailey Allen has a lot to smile about these days.
After being diagnosed with late stage Lyme Disease following her freshman year of college, Hailey had to quit school to focus on her health. But things are starting to look up! Hailey just re-enrolled in college and is taking her first class since the diagnosis. Although Lyme Disease might always be a part of her life, she is determined to not let it take her life away.
We have a feeling this is just the beginning for you, Hailey! :-)
Every Ella: Tell us about yourself.
Hailey Allen: My name is Hailey. I'm 21-years-old, and I currently live near Milwaukee, WI. I come from a big family with five older siblings (2 blood, 3 step), and I also have a beautiful niece and nephew! Family, humor and helping others are truly my favorite things.
When were you diagnosed with Late Stage Lyme Disease. Can you tell us what that means and what your symptoms are?
I was diagnosed with Chronic Late Stage Lyme Disease and five co-infections in June of 2014, right after my freshman year of college. Lyme and co's are bacterial or protozoan infections most commonly transmitted by ticks. However, there are also other ways of contracting the diseases.
Because it took so long for me to receive a diagnosis, it turned into a multi-systemic issue -- meaning that my brain, heart and numerous organs are all being affected. Currently, my predominant symptoms are fatigue, widespread joint pain and cognitive impairments such as poor concentration and memory.
How long were you sick before you were diagnosed?
I showed symptoms at least six years prior to my diagnosis. They started in middle school with fatigue and joint pain. I was told to make sure I was getting enough sleep and that my joint pain was just "growing pains." As I got older, the symptoms progressed. The fatigue became more severe, the joint pain more widespread and I started experiencing gastrointestinal issues, migraines and frequent viral infections. I saw about a dozen doctors, had countless labs done, MRIs, CT scans and three colonoscopies. All of these came back normal. It wasn't until a family friend suspected Lyme Disease that we sought out a specialist and finally had the proper testing done, which lead to my diagnosis.
What has been the biggest struggle for you in fighting the disease?
The biggest struggle with all of this is that Lyme is both controversial and a politicized disease. The government and the CDC do not recognize the illness when it is Chronic/Persistent/Late Stage. The current guidelines for treating Lyme only cover acute stages and allow for one month of antibiotic therapy. This puts both doctors and patients in limbo. Doctors who treat Chronic Lyme are at risk of having their licenses suspended, and patients are stuck with astronomical medical bills because any treatment past 30 days of antibiotics is considered "experimental" and is not covered by insurance. In short, it does not matter (to insurance companies) if you were infected 24 hours ago or 24 years ago, you only receive coverage for one month of treatment. Having a chronic illness in and of itself is taxing, and when you add on the complexity and controversy of it all, it can get incredibly overwhelming.
Has Lyme Disease affected your relationships with family and/or friends?
Yes, some in great ways and others disappointing. My dad, mom and sister have all been touched by serious illness. Of course you would never wish disease upon anyone, but it has been incredibly helpful to have their support and encouragement. The way this disease has impacted friendships has probably been the most surprising. Lyme is an "invisible illness," meaning that by looking at me, you would never know the battle my body is fighting on the inside. This has been hard for some people to grasp, and they don't understand how I can look good but not feel good. I have lost touch with some of my previously very close friends because of that. On the other side, however, some of my childhood friends and peers from high school have reached out and have been so incredibly loving and supportive. I have been blown away by their compassion and generosity.
You had to take time off from school and just re-enrolled. Congratulations! What class are you taking and what was your first day like?
Thank you! I am taking Introduction to Acting this semester. I have always felt in my element in the classroom and have done very well academically. However, this class is so different than anything I've ever done. This course is very interactive and is performance based. What is hard for me to grasp is that there is not always a right and wrong answer. Performance art is personal and can vary from person to person. Needless to say, on the first day I was scared out of my mind. BUT, I am so glad I am challenging myself and exploring new passions.
How does it feel to be back amongst your peers?
It feels incredible. Walking on campus for the first time was pretty magical. I immediately felt energized being surrounded by people my own age again for the first time in two years. Although I don't know anyone at this school, I am looking forward to making new friends and working towards instilling a sense of normalcy.
Your Instagram was originally made to focus on your medical journey, but recently you've changed it to just be about you. What made you change your outlook and focus?
I started my account with the hope that by documenting my journey, I could inspire, encourage and educate others. I absolutely loved finding that special community of warriors on Instagram. Connecting with people who could relate to what I was going through was incredibly therapeutic. However, as my body started to slowly heal, I realized I needed to work on healing myself mentally and emotionally. Having a chronic illness is a tricky balancing act. On one hand, you have to put all of your time and energy into healing, but on the other hand, you don't want your illness to consume you. I began to realize that my illness was becoming my identity, and I knew that had to stop. Lyme is a big part of my life, and while I'm not ashamed of that, I also want people to know that there is more to me than my illness.
What are your dreams for the future?
First and foremost, health! Aside from that, there are so many dreams and goals I have for the future. Some of the biggest include traveling, exploring the non-profit sector and potentially delving into the film and entertainment industry.
Name one woman who inspires you.
Oh my goodness. There are SO many! But the first that comes to mind is Sophia Bush. Sophia uses her platform as a catalyst for creating a positive social impact. She is compassionate, wildly intelligent, hilarious and driven. She has the absolute biggest heart, yet isn't afraid to stand up for what she believes in. I love that she is a champion for women and girls and preaches empowerment and self-love. I've had the honor of interacting with her many times via social media, in addition to meeting her this past August. And let me tell you… she is just as lovely in person! She inspires me to be more, do more and create more, but also to recognize that I already am enough. Simply put, she is the ultimate badass.
If you could meet any female celebrity, who would it be and why?
Ellen DeGeneres! She is easily one of the funniest people to ever inhabit this lovely planet we call Earth. I feel we share a similar sense of humor, so having the opportunity to make her laugh would be a dream. I also adore how generous and incredibly loving she is. I'd image we'd discuss changing the world, I'd win her over with my charm and humor and then she'd offer me a job. Super realistic, right?
What advice would you give girls today?
One of the best pieces of advice I ever received was to become my own best friend. To spend time getting to know myself, to be kind to myself, to cherish myself, to make myself laugh and most importantly, to love myself. This is the best advice I would pass along to girls today. It might feel a little strange at first. It isn't always easy to sit alone and be with just yourself and your thoughts. It might feel silly to look in the mirror and compliment yourself. But I promise that you will eventually begin to listen to and respect the beautiful girl that is staring back at you. Once you build a strong foundation with yourself and recognize your own worth, nothing is impossible.
What do you like to do for fun?
I absolutely love traveling and exploring new places! I moved to Milwaukee about 2 years ago, and it has been so fun to explore all of the food and culture the city has to offer when I feel up to it. I always enjoy spending time with friends and family, but I'm also down to hanging out with myself! And then there are Netflix, TED Talks and podcasts. I seriously don't know what I would do without them!