What It's Like Being an Ivy League Student With Lyme Disease

Eight a.m. My alarm blares. I wake up as exhausted as I was when I went to sleep. At least I slept last night. I sit up, fighting the sharp pain radiating down my back. Sunlight streams through my blinds, and I wince as it touches my eyes and stabs into my head like a knife. I pop a K-cup in my coffee maker and glance at the day’s schedule on my phone. Only a few hours of class, but I know they’ll sap every ounce of my energy. I hope I can make it through the day.

I grab my morning medications from the bottles covering my desk and swallow a large handful of pills. I wash my face and select my outfit as I sip my black coffee. By now, the meds have hit. Here we go…My head throbs, and sweat beads down my face and chest as my body is buffeted by alternating waves of chills and hot flashes. I slowly swallow some water and close my eyes as I fight off the nausea. I put on some music and sing along to today’s top hits. I sit before my makeup mirror and begin sweeping foundation onto my face, across the mask of burning, scaly redness around my eyes. The brush drops from my hands, slipping through my fingers without provocation. At least it wasn’t my phone this time. I pick it up and continue covering my battered, blotchy skin. My vision blurs, making the application of eyeliner a challenge. All things considered, I’ve done a good job.

Dressed and made up, having covered up all signs of my chronic illnesses, I pack my backpack. My right hand shakes and trembles, jingling my keys as I zip them into my bag. I slide on my dark sunglasses, to block out the stabbing light, and walk down my front steps, blending into the stream of kids heading to class.

I’m a 21-year-old student at an Ivy League school. Looking at me, you never know that every day is an immense physical and mental struggle. You wouldn’t see my five year battle with chronic neurological Lyme disease and bartonella. You would never know that I experience devastating daily migraine-like headaches, brain fog, cognitive deficits, fibromyalgia, diminished motor control, and chronic fatigue, among other things. You might see my hand tremor but not the countless visits to specialists, the spinal taps, blood tests, and MRIs. You won’t see the panic attacks and bouts of depression caused by bacteria invading my brain, nor the long months when I could barely get out of bed. You would never know I was any different from you.

Invisible illness is a particularly difficult burden to bear, simply because it makes you invisible. It swallows you whole, destroys your plans, devastates your family, and builds an impenetrable wall between you and your peers.

Invisible illness is isolation. Most of my peers’ priorities include going out, drinking, getting a job, etc. Their biggest problems are midterms and hangovers. My biggest problem: survival.

Some of my daily concerns include whether or not I’ll be able to read and study at all, whether I’ll make it to class, whether I’ll be able to stay awake through the day. I worry about my health, long-term – whether I’ll get sick again, whether I’ll ever be able to have a family of my own. I’m often too sick to go to bars or parties, or even get out of bed. I often have to cancel plans. Needless to say, I’ve lost friends. I don’t blame them; they just can’t understand.

Invisible illness is pain. It is the real, physical, concrete, terrible pain that other people discredit because they cannot see it. It is the emotional pain of being deserted by fickle friends, the anguish of always feeling sick and tired, the exhaustion of having to fight every single day.

Invisible illness is revelation. It holds a spotlight to the people in my life, showing their true characters with stunning clarity. Yes, some have been revealed to be selfish and uncaring, but others are loving and genuine. My family, my boyfriend, and a few friends have stuck with me unconditionally, picking me up each time I fall. They give me strength when I have none, and show me that no matter what, I am never alone.

Invisible illness is maturity. It has refined my priorities and given me a powerful sense of purpose. I want to dedicate my life to helping kids and families struggling with chronic illness as a pediatric psychologist. I used to lament, consumed by self-pity, “Why me?! What did I do to deserve this?” But now I know. I didn’t deserve it; I got dealt a tough hand…And so did thousands of children. Very few people understand what it feels like to battle chronic conditions, but I do. I can help and support them. I can show them they’re not alone.

Invisible illness is visible strength. It has made me resilient and tough, gritty and determined. It has shaped my character and made me a better person, someone who treats others with compassion. It has repeatedly knocked me down, derailed my plans, pushed me to the limits of my physical and mental strength…

But it has not broken me. It will not break me.

I am a survivor.

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Gettyimage by: tetmc