Please Believe Me When I Say Lyme Disease Is Real

I have a real disease.

I have five real diseases.

I have five chronic, incurable, infectious, real diseases.

They avoided detection by burrowing, wriggling, turning, twisting and wrenching their way into the walls of my blood vessels, into my glands, heart, lungs, muscles and joints. They have wrapped themselves in the very white blood cells meant to destroy them and used them as a cloak of invisibility and have inhibited my immune defense by simply switching it off. But like all living things, these bugs have a DNA sequence, and turns out, all I had to do to find them – to break their secret codes – was pee in
a cup. Now my enemies have been laid bare. I have a list of names, and I’m going to call them out one by one; I’m going to wave them like a flag and wear them like a badge of truth.

There is an insatiable craving within the Lyme community. Like a single-minded hive, we don’t need to say it out loud, we all sense it. We’re familiar with the dance of sagging shoulders, heavy sighs, clenched jaws and sometimes tears.

Validation.

Beyond a cure, it feels like the thing we want the most. We are weary of walking away from conversations and questions about our disease feeling like frauds, knowing we’re not, asking ourselves if maybe we are.

 

At times, we are bitter. It is disheartening to reveal your diagnosis to responses like, “Well, did you have a blood test?” or “Did you see a tick?” If we seem to set our shoulders and tighten our jaw, to snap out a short answer, it’s likely because those questions imply doubt.

At times we are jealous. Before a single case of Zika had made its way into the United States, a request went out from the White House for $1.8 billion to fund research and education. We, on the other hand, are more than 300,000 thousand strong per year and still struggling to be heard. We cry for help, but it falls on deaf ears because we reside behind an invisible wall of ignorance, greed and closed minds that continue to deny our existence. We pound our fists and shout our pleas anyway, but this feels like an awful secret that, try as we might, we cannot seem to reveal.

We have an “awareness month” during which we bombard our Facebook and Twitter feeds with scary stories of Lyme victims whose hearts have needed replacing, who wake up completely paralyzed, who were institutionalized for psychiatric disorders only to learn they had Lyme on the brain. We plaster the faces of Lyme-infected celebrities on social media in hopes their name recognition will lead to our affliction’s. We blog: typing, deleting, typing in hopes of finding the right words to describe a fatigue that’s more than fatigue, a brain fog that’s more than a fog and pain that travels from joint to joint, muscle to muscle and coats our skin. Our special month is May, when most begin to bask in a new spring. But we know it as a dangerous time. Visions of poppy-seed-sized tick nymphs fill our heads while we obsessively check for them, coat our skin in repellent and our clothes in permethrin.

Like cancer, Lyme disease eats away at our insides. The treatment makes us so much worse initially that it has to be given in stages, and often the best we hope for is remission, not cure. Like HIV, it disables our immune systems either to the point that we get sick with everything or we get sick with nothing because our bodies, already overwhelmed, cannot respond. Like Zika, it is vector-borne and can cause birth defects, miscarriage and stillbirths. Though most cases are transmitted via deer ticks, the bacteria that causes Lyme itself has been identified inside mosquitoes, gnats and fleas.

So here are my results.

Five check marks represent what my chronic Lyme truly is. It isn’t really Lyme. Borrelia is the causative agent of Lyme disease, but a tick’s belly holds a lot. The chronic version of the illness is a conglomerate of hideous microscopic organisms, each one, classified by itself, as an infectious disease; each difficult to treat and never completely eradicated from the body. This is chronic Lyme for me.

So take us seriously, because we know what we’re talking about. We know of panic attacks in the middle of the night, drenched in sweat, eyes open and bloodshot. We know pain that moves through the body like a rat in a maze, like millions of tiny lightning bolts. We know tired. So tired. The body winding down, every step like climbing the steepest hill, the lift of an arm to massage a constant headache too much effort. We know the loss of a mind. Roads familiar all our lives, to and from work, to and from the grocery, no longer recognizable. We know what it means to feel lost, unable to find the way home. We know racing hearts, the feeling of not having access to enough air.

Don’t be the person who asks about our illness, witnesses sorrow cloud our face, hears the catch in our voice recounting the loss of mind and body, and then casually mentions they had a tick bite with a rash “a couple weeks ago.” Don’t wave off our warning to get tested and treated immediately. If you do, we’ll inform you that Lyme reaches the central nervous system within hours of a bite. Don’t laugh and say, “Well, too late for me, I guess” then walk away while we are left remembering days when we could not walk, laugh or speak. Don’t be the mother who tells us your child has been bitten and has a rash, fever and is vomiting; that your doctor offered antibiotics, but you turned her down because you felt it too “risky” for your child. Don’t tell us you consider a temporary course of antibiotics more dangerous than a lifetime of neurological damage and pain; a lifetime with a disease that has ended our life as we knew it. Don’t leave us confused, wondering how you can be so dismissive of all we have endured.

I say “we” and write of “us” because we are a community. This is not just one person’s Lyme experience but the experience of millions of people around the globe, so don’t think it unlikely you could one day join our group. Know if you have a multitude of symptoms, there’s a real chance you may already have it.

I have five diseases; they are chronic, incurable, infectious.

They are real.

I have a real disease.

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