A Lyme Disease Story
Hope You Guess My Name...
Late-Stage (Chronic) Lyme Disease with a co-infection of Babesiosis. Often a clinical diagnosis, my doctor had to only look at me and listen to my medical history and list of symptoms to diagnose me. The labs (the Western Blot test that other doctors had refused) would later confirm the Lyme pathogens in my blood.
My mom cried and my dad hugged me, and I couldn’t begin to express my gratitude for all the support of family and friends and this doctor who, in every single way, had saved my life.
But this was just the beginning. They set me up with a prescription for heavy-duty antibiotics and vitamin supplements to begin treatment right away, handing me literature and offering reassurances and themselves as examples that though it’s a rough journey, I could be healed.
As I shook their hands and thanked them over and over again, one thought kept echoing in my mind:
I’m going to get better.
Finally, I was able to put a name to the enemy that had ravaged my body and stolen pieces of my life. Finally, I could believe that I had a life worth fighting for again.
But for all of the strength I needed to fight for a diagnosis, I was reminded that I would need to conjure that much more in the months and years of treatment that was to follow.
When The Devil's On Your Back...
It’s in the nature of this particular beast of a disease that patients get worse before they get better. It's known as a Jarisch–Herxheimer reaction, or herx for short, wherein the bacteria release a toxin during die-off that exacerbates every symptom. You’re getting better, but you’re feeling much worse.
The herxes began almost immediately after I began treatment. I slept 18 hours a day, the burning sensation in my legs intensifying with every hour and the joint pain and muscle aches making it nearly impossible to walk. The nightmares became so vivid that I spent half the morning calming my racing heart and trying to separate the dream from reality. When I was awake and lucid, I spent that time reading or writing or trying in vain to keep up with friends on social media because it was the only interaction I was getting. All the while, guilt for not being able to work, to socialize, to take care of myself or my pets began to infiltrate my mind.
I cried to my mom that I should be at work. I worried to my dad that I would lose my job if my disability paperwork didn’t go through. And while my superiors had been nothing short of accommodating and supportive, I feared I would lose the respect of the people I worked with.
Friends tried telling me I shouldn’t care what anyone thought, that my work ethic and character thus far would speak for itself and, besides, what I was dealing with was very real, very scary, very debilitating, and I had to concentrate on my health and healing. But rumors and whispers that mocked me and my situation and questioned my character reached my ears, and the darkness that I was in fell darker, still, as I couldn’t believe that the people I had trusted would turn against me.
I pushed myself beyond what I was physically and mentally capable and, still, I berated myself for not being able to do more. Fearing that I would lose my friends, my house, and my livelihood, I convinced myself that I was becoming an inconvenience for those who had to take care of me, though rationally I knew the choice was never mine, that I wasn't in control of my health but instead at the mercy of my body, of this disease.
I lost my faith, lost my dreams, and lost my belief in a future when every promise of tomorrow seemed instead a promise of more pain and fatigue. The emotional toll, it seemed, had become far worse than the physical.
Four years (one relapse and two more co-infections) later, it's still hard to admit how I prayed for life and begged for death, caught in a limbo from which there seemed no escape in either direction. Lyme Disease strips you of your life so that it feels like you're not even living, and the thought that this could be my daily existence—combined with the guilt of not being able to work or socialize, of being a burden on those who had to take care of me—once seemed impossible to endure.
I’m fighting a disease that is deadly, but it won’t outright kill you. The bacteria burrow into the heart, brain, and other organs, causing complications that can lead to organ failure. In the meantime, the suffering becomes unbearable. The symptoms become so intense, the psychosis shouts so loudly, the desperation buried so far within your heart, that you want to give up and give in and nothing—not the support of friends or the love of family or the saving grace of a pet dog—can keep you holding on.
I almost let go.
I almost let go.
I came so close to letting go.
Me, this lover of life, whose spiritual faith is so strong, who believes with all of her heart in holding onto hope when all else fails, wanted to end it all.
And if I had listened to that helplessness filling my heart, if I had succumbed to the darkness that filled my mind, offering no light as a guide, if I hadn’t made myself go to bed and close my eyes and promise myself another tomorrow…
I would have.
The Sun Also Rises...
It's been a full year since I relapsed now, after spending two and a half years in treatment and only a few months in remission. Sometimes, the relapse feels harder than the original diagnosis because for those few precious months, I got to taste life again. But I'm different now—stronger, better, braver. I know what I'm fighting, and I know what I'm fighting for. And that makes a world of difference.
My doctors saved my life. But being a part of the Lyme community and having this space to express the hardest parts of this disease has healed my soul.
I’ve tried to remain transparent about my journey through Lyme for a number of reasons. The first is that this disease is incredibly isolating, and the loneliness feeds the negativity. Being open and honest with what I've experienced has allowed me to receive necessary emotional support, and that support is what has helped me survive each new day. Because of that, I've been able to advocate for others.
I believe in awareness and education, and the more people who learn how common and what an epidemic Lyme Disease truly is, the better they can help themselves or have compassion for others in their own experiences. More importantly, those who are fighting similar battles can take comfort in the fact that they're not alone.
I know I can’t change the world. I can’t change the minds of those who don’t want to learn—for their own health or for the support of others. But maybe I can be a voice for those who, like myself, are shouting to be heard when no one will listen.
Because I’m still here.
And I'm listening.
Show Me A Smile Then...
It took me a long time to separate myself from this illness, from this pain. It took me a long time to realize there could be blessings here, too. Because while this disease is full of loneliness and frustration and loss, it's also full of community and hope and rebirth. Lyme lives here, but so does faith and courage and strength. This disease changes you, but it also shows you compassion and kindness; it helps you find the courage to stand up for others, for what matters. It makes you brave.
When you’re stuck in a darkness—whether from disease or trauma or some other suffering—from which you fear you can’t emerge, you find whatever you can to hold onto: the pure heart of an animal, the encouragement and smiles of a friend, the unwavering devotion of family members, the fulfillment of a lifelong dream, or even the purpose of a daily job. Hold on, and keep holding on.
Because even the darkest part of the night passes over into morning, when the light begins to dawn, when you open your eyes and realize that your reason for holding on is the beauty and joy and love of life itself.
Your very self.
And you’ll discover things about yourself that you thought you'd lost along the way. You’ll find a renewed strength in a once-fragile spirit. You’ll find there’s a future meant just for you.
So stay a little longer. Fight a little harder. And know that I'm always fighting with you.
(A selection of personal essays written throughout my journey with Lyme Disease. Hosted on the blog archive.)
"It’s like a repeat of two years ago — doctor after doctor ordering test after test, prescribing medications that make little sense, that serve only as a mask for the pain as they pretend I’m all fixed up and send me on my way."
"She brushed the hair away from my face and kissed my forehead, adjusting the blanket around my shoulders, telling me to close my eyes and just rest, just until the doctor came back in."
"What I’m afraid of — what I’ve always been afraid of — is this unknown."
"The pain and the fog that had persisted, that had drained me of any semblance of myself, was gone."
"He’s been my saving grace in ways I’ve scarcely alluded to, for reasons I don’t think I’ll ever be brave enough to put into words."
"While I could have shrugged away the old, familiar signs, it was the new ones that scared the hell out of us."
"I think, I can do this. But then I can’t. Sometimes, it takes everything I have just to get out of bed."
"Every Our Father feels too scripted and all the Hail Mary’s feel too impersonal, and I wonder how you’ll hear me if I can’t say the words."
"Dear God, I begged as I thought of all the tests, the doctors, the disbelief on their faces and the distrust I had begun to feel for them. Dear God…
"If doctors weren’t going to help me, I decided firmly, then I was going to have to help myself."
"It’s enough to really tick you off."
"I’m beginning to feel alive again. I’m beginning to find the human underneath the symptoms again, the person and not the patient."
"No matter how much I may will myself better, no matter how many prayers I whisper or scream, I’m not in control. Not really, anyway, not like I want to be."
"Today is my 29th birthday.
And I’m alive."
"I can see my future now — there’s a dream reborn."
"When you’re battling for your life, fighting a disease that seems to strip you of that future, you find whatever you can in order to hold onto that promise of something better, of another tomorrow, so that it remains real, so that it stays possible."
"Every waking moment becomes a fight for survival, when just living becomes exhausting. For most people, surviving is about the external; for those with a chronic illness, it becomes a war among your very self."
"Who are you without this illness? It heightens everything, and it all seems to be a part of you now. So where does the illness — these symptoms that affect your very personality — end and where do you begin?"
"We need to remember that mental illness isn’t a choice, we need to remember that even those with diseases are flesh and blood and emotional, human beings."
"But today, on this first day of a new year, I vow to start loving myself. Today, I vow to take control back from this illness that has left me helpless. Today, every wish becomes the beginning of something positive.
Today becomes the start of my brave new world."
"Right now, I feel completely at peace, like I’m exactly where I’m supposed to be, doing exactly what I’m supposed to do…As if I’ve gone through exactly what I was supposed to in order to get to where I’m supposed to — here, right now, this place, this being."
"If there is one thing that surviving Lyme has taught me, it is, without conceit, that I can do anything."
(Resources for Lyme Disease education and support)
The best video resource to learn about the hidden epidemic that is Lyme Disease as well as the political controversy surrounding its treatment, “Under Our Skin” and its sequel "Emergence" is currently available for free viewing across the internet.
ILADS is the official educational resource providing updates to Lyme Disease and co-infection research and legislation as well as information on diagnosis, treatment, and recovery for both the patient and medical community.
LymeNet provides access to support groups, a legal database, medical abstracts, and other resources dedicated to the awareness and education of Lyme Disease.
A collection of articles by a top Lyme physician as published in the Lyme Alliance Newsletter. These articles focus on the affects of Lyme on mental health as evidenced in neuropsychiatric symptoms that manifest themselves as familiarly-labeled psychiatric disorders, specifically in the late or chronic stage of the disease.
2010 - present
2010 - present