What They Don't Tell You About Lyme Disease

They don’t tell you it will affect your heart — or how you’ll find out with the rapid onset of air hunger, gasping for air and panicking because you haven’t taken a full breath in minutes.

They don’t tell you that you will no longer be able to use the stairs without falling to your knees with chest pain and dizziness.

They don’t tell you about the indescribable fatigue of a heart rate upwards of 140 bpm.

They don’t tell you you’ll learn to live with a headache — and not a migraine (when you’re lucky).

They don’t tell you that you’ll have to pull off to the side of the road when your arms go numb.

They don’t tell you you’ll have to get used to the symptoms of a urinary tract infection.

They don’t tell you how many days you’ll skip washing your hair because using your fingers sends shooting pains down into your forearms.

They don’t tell you that you’ll be able to feel the heat radiating four inches off your body when the neuropathy sets in.

They don’t tell you you’ll begin to look forward to IV treatments or that the insertion of a needle will become a comforting and pleasant feeling because it is a pain outside of yourself.

They don’t tell you about the everlasting nausea or sudden projectile vomiting.

They don’t tell you about the bald spots, your hair thinning or all your eyelashes falling out.

They don’t tell you that you’ll lose your hobbies or ability to do anything physically exerting — or starting a load of laundry will feel like a workout.

They don’t tell you about the debilitating fatigue leaving you unable to function for more than a few hours a day.

They don’t tell you about the drenching sweats followed by painful chattering and numbingly ice-cold extremities.

They don’t tell you about the fever blisters, skin lesions and cystic acne.

They don’t tell you about the blind spots or that your vision will worsen by day.

They don’t tell you about the sores you’ll develop on your gums and for some, how it will rot your teeth to the point of extraction.

They don’t tell you that you will become too weak to shower without fainting or to lift yourself out of the bathtub.

They don’t tell you that you’ll feel like acid is washing over your joints, muscles and bones.

They don’t tell you about hearing loss or the high-pitched ringing forever flooding your ears.

They don’t tell you about the hatred you’ll feel for the sun as your sensitivity to light worsens.

They don’t tell you about the flares that go on for hours — the screams from excruciating pain, the drenching sweats from seizing or the exhaustion that follows.

They don’t tell you about the manic twitching or the sensation of bugs crawling under your skin.

They don’t tell you about the jerks, the muscle spasms or the inability to hold onto an object without inadvertently throwing it across the room.

They don’t tell you about a heightened sense of smell or how odors will linger in your nose for hours.

They don’t tell you that you’ll wake up every day with swollen glands and a throat too sore to swallow.

They don’t tell you that you’ll spend every day with a stuffy nose, accompanied by random bleeding.

They don’t tell you about the sharp pains in your feet when you walk.

They don’t tell you about the dietary restrictions or that you’ll become fearful of eating because your food sensitivities will vary each week.

They don’t tell you about the brain fog — the confusion at seemingly ordinary tasks, the jumbled letters and inability to read a sentence.

They don’t tell you how many times you’ll have to ask someone to repeat themselves because your brain can’t process the words coming out of their mouth.

They don’t tell you about the memory loss — how many lists you’ll write and end up losing, the terror you’ll feel when you have zero recollection of the day prior or the days you can’t remember your middle name.

They don’t tell you about the dissociation, about zoning out and not being able to snap out of it, or how many times you get lost on your normal route home from work.

They don’t tell you about the months you’ll spend in denial, feeling cheated and too weak to pull the knife from your own wound.

They don’t tell you about the crying spells, the psychosis or complete loss of emotional regulation.

They don’t tell you about the obsessive-compulsive behavior that spins you into anxious habits of chewing your lips until there’s blood dripping down your chin.

They don’t tell you how unspeakably lonely it is to have an illness that nobody understands.

They don’t tell you about the medically-induced trauma you’ll acquire — the irrational fear of doctor appointments, lab results or new treatment regimens.

They don’t tell you about the depression — that you’ll spend each night praying you won’t wake up the next morning.

They don’t tell you about the dreadful insomnia.

They don’t tell you about the Lyme rage.

They don’t tell you that your light will go off, your loved ones will look into your eyes and nobody will be home.

They don’t tell you about the isolation or how many friends you’ll lose.

They don’t tell you about the trauma it will inflict on your family, or the heartbreak you’ll feel when your parents see you suffer.

They don’t tell you that your health will become extremely unreliable, you’ll continually cancel your plans, unable to show up for the people you love, and that the guilt will eat you alive.

They don’t tell you about the days on end you’re unable to eat.

They don’t tell you that you’ll have to learn to comfort others after explaining your diagnosis — when you were the one who needed comforting in the first place.

They don’t tell you about the ever-growing guilt of being a financial burden.

They don’t tell you how difficult and seemingly impossible it will be to sustain a pregnancy, or the high risk of congenital transmission.

They don’t tell you that you’ll need a new wardrobe to combat the neuropathy on various parts of your body or how some days, your skin will be too sensitive for a hug.

They don’t tell you that you’ll have to keep Valium on hand to calm the tremors or your whole body will feel like it’s vibrating during the week of a full moon.

They don’t tell you that your fingers will be too weak to open a Ziploc bag.

They don’t tell you about the insufferable pain you endure with an enlarged spleen.

They don’t tell you how inconsistent your bowel movements will become because the mass influx of antibiotics are destroying the lining of your gut.

They don’t tell you about the cankles or the inability to walk after the blood has pooled in your feet from sitting down for 20 minutes.

They don’t tell you about the hours of recovery after socializing or being anywhere but your bed.

They don’t tell you about Neil Spector, a medical doctor at Duke who had to have an emergency heart transplant due to Lyme.

They don’t tell you how to cope with a new reality that may kill you, or not.

They don’t tell you about medical gaslighting, being called crazy or being told “it’s all in your head.”

They don’t tell you about mold exposure or the temporary paralysis after walking into a water-damaged building.

They don’t tell you about the jealousy — you might have to drop out of school, quit your job, put your life on hold and move backwards while everyone around you moves forward.

They don’t tell you about the grief — mourning the loss of a life you once had or the loss of a future you once imagined.

They don’t tell you how much energy it requires to digest your food or filter sensory information.

They don’t tell you how difficult it will be to breathe, think, speak, drink, eat or sleep.

They don’t tell you that some days, you’ll wake up and be unable to see, hear, walk or talk.

“But you don’t look sick,” said no one who has ever seen me in my darkest moments.