• Annie V. Henry

My Experience with Chronic Lyme Disease: Four Years and Counting | Welcome to My Story

Let’s jump right in

I’ll cut right to it—I have chronic Lyme disease. Not only that, but I also have two co-infections: babesia and bartonella. To avoid sugar-coating it, Lyme Disease sucks. Big time. Anyone who has suffered from Lyme disease—be it acute or chronic—would likely agree with that statement. It has been by far the most challenging experience I’ve endured to date and will likely remain something I will continue to fight to overcome—in some capacity—for years to come. Granted, I’ve been able to find much growth and fulfillment in my journey, however, that does not discount how hard it can be to manage and overcome a chronic illness.

To be able to accurately and comprehensively articulate the experience of living with a chronic illness is difficult to do. It is such a unique experience that—unless you’ve ever lived with a chronic health condition—is hard to relate to and understand. There is a lot of misconception and stigma surrounding chronic illness in the western world and medical system. This is especially true of Lyme disease; it is such a complex and misunderstood disease that is shrouded in controversy and mystery. For those of you who are new to the world of chronic illness, these past few sentences may feel very vague and abstract; I’ll try to fix that soon enough. For those who are all too familiar with a life impacted by a chronic health condition, hopefully you can resonate with what I just described.

The Privilege and Blessing of Health

Having been healthy for eighteen years, I can confidently say that the blessing, freedom, and privilege of health are never fully realized and appreciated until they are taken away. The saying “you don’t know what you have until it’s gone” cannot apply to health more perfectly. Good health is something so easily taken for granted, but for those who don’t have it, it can become your greatest desire and the source of much stress, anxiety, and resentment.

I acknowledge that I was incredibly lucky and privileged to be born and raised fully healthy. Until falling ill at age eighteen, with the exception of a bad concussion, I had never experienced a severe impact on my health. I now look at my life in terms of before and after Lyme, with my illness being the pivotal event that has polarized my 22 years of existence into what feels like two different lives. Though my life has been forever changed by my illness, I look back at those eighteen years with a great amount of gratitude and appreciation, for there are many people who never even get the chance to have a “before” part of their health story.

It is important to note here that the struggle and experience associated with chronic health illness are relative. Some people may look at my experience and find it extreme and overwhelming. Yet to others, my story may feel minor. The four years I’ve been sick, the diversity and severity of symptoms I have experienced—it may be only a fraction of what they’ve endured. I think it is very important to recognize that, although compared to the average “healthy” person it may seem like I’ve pulled the short straw—there are many people who have been fighting a similar, or more extreme, chronic illness battle for much longer than I have. For them, all I have is an incredible amount of respect and admiration. In sharing my story, I hope to do justice to what I’ve come to know as living with a chronic illness. Although there are likely shared experiences that may resonate with others, each person’s experience with illness is different and unique. This is mine :)

Passing it on

I have made much progress—both physically and mentally—since I fell ill almost four years ago. I would attribute much of my progress to the stories and support of others in a similar situation. Because I gained so much value out of learning about the experience of others who battle chronic Lyme disease, I want to share my own story in hopes to provide insight and encouragement to those who need it.

Reading others’ accounts of their own experience with Lyme disease, or other chronic illnesses, was key to me figuring out my health challenges. Because chronic illness is often shrouded with mystery, controversy, and stigma—especially when it comes to tick-borne illnesses—it can be incredibly difficult to discover where to start. From finding an accurate diagnosis, to developing an effective treatment plan, to simply attempting to find a medical professional who will validate your experience: Lyme disease is tricky to navigate, and that’s an understatement. It can be confusing, overwhelming, and utterly debilitating at times. Often family, friends, and even medical professionals are unable to truly understand the experience—especially when you’ve yet to find a diagnosis—which can often leave your situation feeling hopeless and your struggles endless.

After months of going down the rabbit hole, I finally felt a sense of relief when I found accounts of others’ experiences with Lyme disease. That’s it, I thought, That is what’s wrong with me! Finding stories that resonated with my experience was the first step in finding a diagnosis. These stories led me to find the right type of doctor, gave me advice on what types of treatments to look into, and most of all provided me insight on how to handle life with a chronic illness. From those accounts, I received empowerment, validation, knowledge, and most of all, hope.

That is what I hope to do for those who read my story. Life with Lyme Disease is a series dedicated to anyone who is also seeking hope, knowledge, empowerment, and validation.

Whether you undiagnosed and search for answers, living with a diagnosed chronic illness and in need of inspiration and insight, are trying to better understand the experience of an ill loved one, or are simply looking to improve your health through living a more holistic lifestyle—I’m sharing my story to offer inspiration and empowerment to anyone who needs it. At the same time, I hope to bring to light some of the issues and experiences related to chronic illness and our society’s relationship with health. Through my writing, I hope to explore various facets of health and add to the discourse around disease, illness, and holistic wellbeing. In doing so, I hope to do justice to the experience of living with a chronic illness.

Follow the Journey

To follow is a story of my journey living with Lyme Disease. From the onset and progression of my disease, to the long and frustrating process of finding an accurate diagnosis, to the evolution of my treatment protocol and how I manage my day-to-day life with chronic illness, I shall share an honest account of life with chronic Lyme disease.

Summing up almost four years of chronic Lyme disease is not easily done. I’ll do my best to go into detail about the different facets of my experience living with a chronic illness, but it may take a few articles. So buckle up, grab some road trip snacks, and queue up one hell of a rockin’ playlist, because it’s gonna be a long ride. A big thank you to those who follow along.

Much love, Annie

Up Next: Back to the Start: The Onset of Lyme Symptoms | My Lyme Disease Story: Part One