Lyme, Don’t Kill My Vibe: Hailey’s Story

After years of feeling "off," Hailey Allen was diagnosed with Lyme disease. (Photo courtesy of Hailey Allen)

After years of feeling "off," Hailey Allen was diagnosed with Lyme disease. (Photo courtesy of Hailey Allen)

By Jessica Hamlin and Hailey Allen 

Lyme disease is one of those things I’ve heard about for years but don’t know much about. I know it’s transmitted through ticks and I randomly recollect that Irene from 1997’s season of MTV’s “Real World”—the one with the “slap heard ‘round the world”—had Lyme disease.

Other than that, the condition is pretty elusive to me and probably many others.

So when Hailey Allen, a friend of Do The Good Stuff, said she was open to sharing about her battle with Lyme disease, I looked into it more.

Here are some Lyme disease facts and stats:

  • Lyme disease is usually caused by a bacterium transmitted through a tick bite. But mosquitoes, flies, spiders, fleas and mites can also carry Lyme.
  • Around 300,000 people per year are diagnosed with Lyme disease.
  • Most Lyme disease cases in the U.S. happen in 14 states. But, since people and pets travel, ticks can travel and put people at risk anywhere.
  • Fewer than 50% of patients with Lyme disease recall a tick bite.
  • Lyme disease and its co-infections mimic over 300 other diseases, fooling doctors into treating patients for Fibromyalgia, Multiple Sclerosis, Lou Gehrig’s disease, Chronic Fatigue Syndrome, Lupus, anxiety, psychological illnesses, yeast overgrowth and more.
  • Lyme disease symptoms can be numerous and long-lasting and include:

     *A “bulls-eye” rash at the site of a tick bite within 3-30 days, and more after that.

     *Severe headaches and neck stiffness

     *Arthritis with severe joint pain and swelling, particularly the knees and other large joints.

     *Facial palsy (loss of muscle tone or droop on one or both sides of the face)

     *Shooting pains, numbness, or tingling in the hands or feet

     *Problems with short-term memory

  • Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free. Relapses occur and retreatment may be required.
  • Celebrities diagnosed with Lyme disease include Avril Lavigne, Alec Baldwin and Ashley Olsen.
  • There are no tests currently available to prove that the Lyme disease-causing organism is eliminated or that the patient with chronic Lyme disease is cured.

Just reading about Lyme disease can make you feel overwhelmed. So I can’t even imagine having it. At just 22 years old, Hailey, a part-time student intern and nanny who lives outside Milwaukee, Wisconsin, has had it for a few years. She shares more about her experience with Lyme disease and what she’s learned about herself through this health condition. 

Hailey, 22, was diagnosed with Lyme disease a few years ago. (Photo courtesy of Hailey Allen)

Hailey, 22, was diagnosed with Lyme disease a few years ago. (Photo courtesy of Hailey Allen)

What was life like before Lyme disease?

Life before Lyme was pretty much that of your average child or teenager. Except that it wasn’t. I went to school, played soccer, participated in clubs and activities, and spent time with family and friends. Yet, there was always this underlying feeling that something was off. In hindsight, life was actually a lot bleaker…but I’m getting ahead of myself.

When were you diagnosed with Lyme disease? What led to that diagnosis?

I was diagnosed in June of 2014, just after finishing my freshman year of college. My onset of symptoms started in middle school and as time went on I accumulated more complications. I was misdiagnosed for years until a friend of my mom’s recognized the symptoms as Lyme and recommended a doctor who used more accurate testing (standardized testing for Lyme can produce a false negative up to 50% of the time).

nevertheless, she persisted. sat in treatment today reflecting on the phone call i received exactly three years ago. the phone call that delivered my diagnosis. three years. there is so much i could say about what these last three years have held. a seemingly indescribable journey. i often receive comments commending my strength. my perseverance is applauded and my resilience admired. people ask, "how do you do it? where do you find the strength?" the honest truth? i've always intimately known my strength. it is one thing i have never ever questioned. and while i'm grateful for my grit, it is not what i'm most proud of. perhaps the greatest gift i've received through all of this pain and turmoil was an introduction to my softness. a part of me that i'm still getting to know. my softness has taught me that i'm allowed to NOT be strong all the time. that it's OKAY to feel it all. my softness has taught me the power of vulnerability. and vulnerability has shown me the beautiful impact of tough and truthful conversation. my softness has allowed me to connect with THE most incredible souls. i cannot even begin to describe the caliber of my people. most important of all, my softness has taught me to be gentle with me. to embrace myself, and all of my dynamic pieces. THIS is what i am most proud of. the love and dedication i've poured into becoming the best version of myself. yes, Lyme is a giant pain in the ass. but it has also been my greatest teacher. the adventure continues, and today i'm celebrating just how far i've come. being alive is pretty dang spectacular!

A post shared by Hailey Allen (@thehaileyallen) on

What went through your mind when you were first diagnosed?

Relief and gratitude. I sobbed after receiving the phone call with my diagnosis. Not out of fear, but out of gratitude. It was the first time in over six years someone validated my pain, believed my story, and took the time to evaluate at me as a whole person. When I was younger I was told my symptoms were just growing pains, and that I was a sensitive girl who wore her heart on her sleeve. Naturally, I began to question and doubt myself and my symptoms after years of being told there was nothing wrong with me. I felt great relief that there were finally answers as to what had been ailing me.

For those who aren't familiar, how would you describe Lyme disease?

In the simplest of explanations, Lyme disease is a vector-borne infection most commonly transmitted by ticks. However, there are other ways of contracting it. The spiral shape of the bacteria enables it to burrow into nearly every part of the body, often leading to a multi-systemic infection. Lyme can cause over 300 symptoms, which means you never really know what to expect on any given day. It feels like a never-ending marathon of constant pain, fatigue, and confusion. There is a saying in the Lyme community that “you don’t get it until you get it.” It’s enormously difficult to explain the intensity and gravity of this disease.

What has life been like since your diagnosis? 

Immensely more complicated, and immensely more beautiful. Nearly every aspect of my life has changed since diagnosis. I withdrew from college, moved back home, and have been in intensive treatment for three years. It has simultaneously been the most trying and exhausting of years, but also the most fulfilling. My limitations have taught me the importance of boundaries and self-care, and my pain has motivated me to live with greater passion and intentionality. Life looks like a lot of appointments, pills, treatments, and blood draws, but it also looks like a whole lot of joy. 
"Life looks like a lot of appointments, pills, treatments, and blood draws, but it also looks like a whole lot of joy," Hailey says. (Photo courtesy of Hailey Allen)

"Life looks like a lot of appointments, pills, treatments, and blood draws, but it also looks like a whole lot of joy," Hailey says. (Photo courtesy of Hailey Allen)

How is Lyme disease treated and what does that look like for you?

Lyme disease is an incredibly complex illness, which makes treatment very difficult. There is no universally accepted treatment or cure for late stage/chronic Lyme. More often than not, patients also have a host of other tick-borne illnesses and immune system complications. Because Lyme affects everyone differently, treatment will vary from person to person. For me, a combination of western and eastern medicine has been the most helpful. I’ve done antibiotics (both oral and IV), hyperbaric oxygen therapy, ozone therapy, nutrient IVs, energy healing, diet changes, and lots of tinctures and natural supplements.

What have you learned about health and yourself through Lyme disease?

That there is strength in softness. My definition and perception of strength have changed over time. While I used to think strength meant always having it together, I now understand the power in the art of vulnerability and in the practice of letting go. Lyme disease has taught me the importance of remaining gentle with myself, my body, and the world.

What advice would you give to someone diagnosed with a health condition? 

That, “your body’s ability to heal is greater than anyone has permitted you to believe.” It’s more of an encouragement than advice, but I think that's what people need the most after being diagnosed with a health condition.

Anything else you want to share about Lyme disease and your experience?

Lyme disease is the fastest growing vector-borne infectious disease in the United States. With far over 300,000 new cases each year, it is twice as common as breast cancer and six times more common than AIDS. Yet, it receives less than 1% of the funding. It is a public health crisis that few are talking about. I share my story in hopes that greater awareness will be brought.
"My definition and perception of strength have changed over time," says Hailey. (Photo courtesy of Hailey Allen)

"My definition and perception of strength have changed over time," says Hailey. (Photo courtesy of Hailey Allen)

The Good Stuff.

We asked Hailey about some of her favorite things. 

Fave workout/way to move: I’m super into what I’ve coined as "Soul Strolls." Aka walking during your favorite time of day (mine is golden hour), whilst soaking up the sounds of a) nature b) podcasts or c) pump up jams. 

Fave wellness practice: Lymphatic massage and CranioSacral.

Fave self-care practice: Detox baths (Epsom salt, baking soda, hydrogen peroxide, essential oils). Also, naps. Always naps. 

Fave food: Kale and chocolate. Not together though, don't worry. 

Fave drink: Water. 

Fave snack: Raw veggies and hummus. 

Fave kitchen gadget/appliance: Vitamix. It’s how I juice, smoothie, and make nice cream

Fave place in the world: Iron River, Wisconsin. My family had a lake house there for generations and each summer we would gather for some much needed nature filled reprieve. 

Who or what inspires you and why? Stories. I love learning about people’s personal histories, what makes them tick (no pun intended), and what brings them joy. 

Fave quote/saying/mantra and why: “Let the rhythm find you.” I’m on the cusp of a new season that is equal parts exciting and daunting. Actually, it definitely feels little more daunting. This mantra of sorts is helping me remain open and confident that I’ll find my footing amidst the transition. 

Fave podcast: This changes weekly as podcasts are my one true love. Currently, I’m in a committed relationship with “Terrible, Thanks For Asking” and “That’s So Retrograde.” 

Fave workout song: “Glorious” by Macklemore and Skylar Grey 

If you had a theme song, what would it be and why? “Don’t Stop Me Now” by Queen (I honestly have no idea, but this was the first song that came to mind). 

Fave website: Google. 

Fave movie: “Matilda” remains an all time classic. 

Jessica Hamlin is an LA-born and bred journalist and editor who started taking pictures of food back when everyone used film cameras. A graduate of the Institute for Integrative Nutrition’s health coach training program, she’s passionate about wellness and enjoys making and discovering delicious and healthy food. Her work has appeared in Clean Plates, NPR affiliate KPCC, AOL, and Eater LA.