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Lyme warriors share their struggles and triumphs, advocating for greater awareness and support for those battling Lyme disease.
Journal entry, 8/11/17 – Kind of nauseous, belly feels weird. Some intermittent chest pain. Getting shaky, more chest cramps, really dizzy whe [sick] standing, nausea increasing. So scared right! [sic] Very sudden, intense increase in symptoms. Shaky, heart pain, nauseous, really dizzy, hard to walk, short of breath, difficulty speaking, concentrating, cotton mouth.
I am a Lyme warrior, five years into remission. I was diagnosed with Lyme disease at the age of 39. Early on in my battle, I knew that people needed to understand the truth about this disease. At the behest of my doctor, I began journaling right away about what I was experiencing. 
What started out as a means for tracking symptoms, as well as catharsis, would become the foundation for my memoir. From the very beginning, it was such a harrowing experience that I needed to let others know they weren’t alone in their suffering. My Lyme journey sparked indignation for a whole community of patients being ignored.
My goal since reaching remission has been to reach my hand out to those still in the midst of their treatment. To offer comfort to those who are still suffering in the shadows. As a Lyme blogger, advocate and peer mentor, my heart goes through a gamut of emotions as I read the questions and comments on support pages. Those emotions range from frustration to despair, sorrow to disbelief. There are so many people out there right now, grasping at straws, advocating for themselves or a loved one, trying to find answers. Those answers shouldn’t be so hard to find.
Every day, I am overwhelmed with disbelief when I see how many people are seeking out medical advice from their peers because they can’t find a doctor to treat them. I am full of sorrow for the patients who attempt to treat themselves, with the advice of other random Lyme patients. Despair takes over when I read that a patient is contemplating giving up, throwing in the towel or ending it all, because they feel so alone and hopeless. But most of all, I am angry that this disease is still enveloped by such a vast cloud of confusion.
“I’ve had neuro lyme for 10 years. My symptoms include anxiety, depression, ocd, severe learning disabilities, brain fog, double vision, depersonalization and derealization, fatigue, etc. because my brain is not working well, I’m having a hard time knowing what to do, and I don’t feel well enough to work, so have no money to afford an ND. If someone could please help me and tell me what to do or what to take to heal from this it would mean the world. I have a hard time processing the information from his book due to my eye issues and processing disorder. Thank you” – Anonymous social media post
I wish I could claim that my Lyme disease story is somehow unique or special. Unfortunately, it shares the same confusion, loneliness and desperation as so many other Lyme patients. The overview is the same. It begins with going undiagnosed or misdiagnosed for years, often times decades. 
I believe I went undiagnosed and/or misdiagnosed for most of my life, with symptoms beginning around the age of nine. For fifteen years I believed I had fibromyalgia, an untreatable, incurable disorder. I did not thrive in life. I survived by ‘managing’ my symptoms, but really I was just floundering. This is not uncommon in the Lyme community.
“Please help. I just found out I am positive for Lyme disease. I don’t know since when I have this. I don’t understand what it is? Is there a treatment? Cure? For a few years I’ve symptoms such as tingling, numbness, headaches, palpitations, sweating, stiff neck, muscle spasms, muscle aches, nausea, chest pain, burning sensation on my spine and foot sole and both breast which can be painful. Very recently I’ve felt dizzy like I am about to collapse. Three weeks ago I was diagnosed with peripheral neuropathy (they said they don’t know where this comes from but they thought it was MS and referred me for further investigation.) I have also have cervical spondylosis and I thought all my symptoms are related to this, but is it possible for the symptoms above to be because of the Lyme?” – Anonymous social media post
If the first injustice for Lyme patients is getting misdiagnosed, the second travesty is how difficult it is to find a doctor who can properly diagnose and treat them. The day I finally received my Lyme disease diagnosis was a mixed bag of emotions. A confusing combination of relief and trepidation. My doctor had prepared us as best as she could but the lack of easily attainable knowledge surrounding this disease was shocking. There is an enormous void in knowledge regarding the severity of Lyme disease and Lyme patients are inexcusably falling into that black hole.
“Hi everyone! I was diagnosed 30 years ago and it’s been a hell of a ride. I have many coinfections and due to this moved from A state to B state because the weather played a huge factor in my health. My condition is worsening and I can’t find a Lyme specialist here in my home state.” – Anonymous social media post
I’m certain most Lyme patients can relate to finally feeling seen. The day you hear those words, “You have Lyme disease”, elicits a sense of justice and recognition. On the day of my diagnosis, after suffering quietly and alone for so long, I finally felt validated. People want affirmation of the sickness they have carried around like a dark cloud. All that frustration over years of feeling unheard, misunderstood, less than, incapable and inept…finally acknowledged. I know that these feelings are not unique to my story.
Therein lies the final straw, and the one that very nearly breaks the camel’s back for so many of us. Treating Lyme disease was the most difficult thing I have ever done in my life. The entire time I was in treatment for Lyme disease I was scared and lonely. And just like every other Lyme patient, I battled Lyme disease like I was waging a war. Every day was a struggle.
That entire two-and-a-half years, my life was consumed by Lyme disease and thoughts of whether I would ever get better. Keeping hope alive was a constant, but necessary, endeavor. There were days when I was too weak to shower or walk my dog. There were days when the brain fog was so intense I got lost at the grocery store. There were weeks when, after barely avoiding car accidents because I would simply forget I was driving, I was unable to drive. There was Lyme rage, drenching night sweats and air hunger; loss of memory, word recall, sense of self, friends and hair. It was a long, traumatic journey. And along that journey it was difficult, if not impossible, to find a support system outside of my husband and my doctor.
When I look back on those days, months and years, I imagine myself drifting alone in a boat. Surrounded by a vast ocean of questions, grey clouds looming overhead. Randomly, yet regularly, winds would whip up in the form of crazy new symptoms, swirling like the torrent of a hurricane. These winds would whisk me away to a place of emotional torment. Pain, fear and suffering bounced off my metaphorical boat like a thousand tiny rain drops, saturating every waking moment. Uncertainty swallowed me up on a nearly daily basis. I wondered constantly if anyone else was experiencing what I was experiencing.
There’s a reason Lyme disease is referred to as the silent epidemic. Unless you’ve encountered this disease, or have been a loved one’s caretaker, the public at large does not understand the severity of this battle. I think it’s safe to proclaim that Lymies from all over the world are feeling scared and alone. 
Doctors don’t believe them, family members think they’re making it up and co-workers think they’re lazy or incompetent. The chronically ill have questions that bounce around an echo chamber, never to be heard outside the walls of obfuscation and evasion. Would-be and should-be patients are seeking out medical advice on Lyme disease support groups. Current patients are crying out for recognition, seeking comfort in numbers.
I continue writing and advocating because it shouldn’t be this hard to find support. It shouldn’t be this hard to get diagnosed. There needn’t be so much mystery and gaslighting surrounding a disease that has left millions of Americans with persistent symptoms. I share my experiences in an effort to throw a lifeline to those currently drifting in their own boat of despondency. I hope to quell the winds of uncertainty by assuring others that I have experienced that pain, that fear, that symptom, that hopelessness. Throughout my battle, I got out of bed every day, donned my armor, and fought against this invisible enemy. It wasn’t easy. Somedays it felt damn near impossible. But, with determination and a ton of tenacity, I reached remission. Lymies, you are not alone in this battle.
