Feeling Like I'm Behind 'Frosted Glass' When I Talk About My Lyme Disease


I look great. That’s what you’re telling me anyway. Oh, I know you don’t mean Beyoncé-great. You just mean I don’t look sick. Great. I shrug. “I feel pretty good,” I reply. But you don’t see the uncivil war inside; you can’t know I am wishing with all my might to crawl out of my skin and get as far away from my body – my battlefield – as possible. Good riddance, army of malicious bacteria. Stop assailing my tissues and ruling my life. I can’t strip you of power and end your reign so I settle for dreams of exile.

You are sitting with me in this park, but cannot detect the presence of my enemies, these invisible bacteria invading my realm. I’m not expecting you to. Most blood tests can’t find them. They are masters of the clandestine, concealing themselves from my immune system, antibiotics, laboratories, doctors and researchers, leaving no visual trace when you look at me.

I know their names: Borrelia burgdoferi, Bartonella and Babesia, among others – all partners in Lyme. I feel their effects. Right or wrong, they are the most real thing in my world, and even though I cannot see them, they are looming larger than anything else. They are enclosed by my flesh, living and working inside my body – a whole society of overtakers. Come closer and you might run into them. You might notice some things are off – these puffy dark pouches beneath my eyes, this slight veer to one side when I walk, this limp, my aimless sort of antihistamine-like stupor. But no…you are too far away on the outside.

You’re noticing I seem tired and acknowledge you’ve heard Lyme disease makes people very fatigued. My hopes rise a bit as I affirm that it does. But then you bring up the weather. You suggest it might be this weather we’re having. After all, this weather makes you feel tired. So, I don’t bother with detail; I don’t tell you that all I know of “tired” is what I remember, how much I liked “tired,” how good it felt when it followed a long hike or a productive day in my garden. “Tired” meant I had done something. I don’t tell you how it is getting harder to remember myself before this disease. Instead of trying to explain, I nod agreement and blink a lot, trying to stay awake, but I am fading: feeling this sludge of exhaustion coat my limbs, painting me with a weariness heavy enough to keep me still no matter how badly I wish or need to move, stealing first my ability for motion, then my desire.

I am wondering if this weather makes you feel like you are trying to hold up a car with the back of your head. Does it encase your arms and legs in the same iron sleeves I wear? Does it make chopping a vegetable akin to climbing a salmon ladder? I often turn to the Psalms for comfort and find the singer speaking of God as the lifter of his head. I know literally what this means. If God didn’t hold my head up some days, it would just stay plastered against the bed or the back of a chair. And some days He doesn’t.

You are suggesting we walk a bit. Do you see me cringe? It’s there, right under my smile. I am aware I can’t sit forever but really don’t want to bear my weight. One of these bacteria must have thousands of tiny fists whose only job is to pound the soles of my feet day and night. It hasn’t let up in almost a year. I am gritting my teeth as I stand. You are chatting, but I am distracted. I can’t help it – thinking about how hamburger might feel if it had feelings – would it feel like my feet? Maybe the tenderness, but then there’s the burning, buzzing, stinging, tingling. I doubt hamburger would feel that way. A fleeting thought of lying down, of relief, and then I remember my heels can’t touch the mattress, my toes can’t bear the weight of the bed covers.

What did you just say? I was thinking maybe I should stop being stubborn and just get a cane or a wheelchair and I missed your last comment. You are laughing, so I laugh too, but have no idea why. (I can’t imagine I really need to go that far – a wheelchair? Wasn’t I hiking up and down ravines a few months ago? How could I possibly need to be wheeled on a paved, flat trail or through the grocery store?)

Oh, you were saying something about how you heard Lyme causes arthritis. I think, ah, you believe in my pain. Then you ask if my knees hurt and I say, “Oh…yes!”

“Well, honey, at our age what do you expect? It’s time for our joints to hurt.” I know you are only trying to reassure me, letting me know my pain is normal – for my age.

I feel a strange need to defend myself but fold up inside instead of pointing out that my knees didn’t hurt until I got sick, that turning 48 doesn’t mean every joint in my body should suddenly feel full of knives and needles, my skin should hurt, my muscles should burn and ache or lightening bolts of pain should strike in my legs, arms, ribs, ears – wherever they please. It shouldn’t mean the weight of a book on my lap is more pain than I can bear. A closed-mouth smile is all I can muster.

We stop walking to stand and talk. Do you see me favoring one foot, then the other, until I finally point out I need to sit? Your side of the conversation never misses a beat, but I’m not hearing much as I am so focused on the bench ahead. Like a marathon runner at mile 26, that 0.2 feels like the longest day of my life, only I skipped the 26 – all I have to do is this 0.2. I am gripping the arm of the bench, knowing my pain shows on my face, in my movements, but you’re showing me your new shoes. “They’re cute,” I say, recalling all the shoes in my closet, unworn for the last year – dress shoes, boots, tennis shoes, running shoes, all of them like wearing a bed of nails or pounding hammers.

What did you just say? I’m ashamed to ask, ashamed I missed it – again. I listen, but lose track, certain I am a couple of sentences behind by now. Don’t take it personally – I am trying, really. And I will try until I am exhausted, until panic sets in because the word I need to retrieve from storage is taking too long to locate. I fear I may pick the wrong one, or maybe I already did because you’re looking at me funny. Words, thoughts, ideas, whether yours or mine, do not flow and connect the way they used to. They are stuck behind a bacterial barricade, piling up into an unmanageable aggregation. Sometimes I get up and wander around, not knowing why, and then I think maybe I’m looking for all the words I’ve lost. I see and hear you but from a rudely awakened state, as if someone dropped and shattered a plate next to my ear while I was in the deepest part of a dream sleep leaving me in a groggy limbo.

I consider explaining that my white matter probably resembles Swiss cheese, but I know you would assure me once more that it’s just menopause or old age, and joke about how you’re forgetful, too. Something like, “Let me tell you, I have cognitive deficits, and I don’t even have Lyme disease. We’re just getting old.” You would think that was funny.

Does turning 48 mean forgetting how to get home from work? Or struggling to spell words you learned from Dick and Jane? Or recalling your address or phone number? When you reach your midlife, do you really think flipping the light switch will turn on the dryer, or pushing on the rearview mirror will turn off the car radio? Is it really so hard to discern left from right in your late 40s?

I am hoping you don’t suggest following me home for a visit. We might not make it. I might not remember how to get there, or I may have to stop and ask you where we are and where we were going in the first place. As we discuss those things, I may see something and comment on it. You may not see what I see, but don’t worry, it’s not you “losing it.” Sometimes I see things that aren’t really there. Is that normal for my age?

You are hugging me and I realize you must’ve said you were heading home. I’m hugging back and wishing I had been more attentive, more absorbed in your world, your thoughts, your jokes and stories. But your words and their meanings seem to float across a slow moving pool toward me and sink before I can catch them. I have to dive down and by the time I surface, so many more are coming my way. I’m afraid I grew weary today and let many of them drift past.

Waving, you pull away and I sit still in my car, in the quiet. My body hurts. Not a centimeter of my frame is pain-free. I dread turning the wheel, my upper arms ache as if I had ten tetanus shots in each one the day before. My fingers and wrists may snap it seems. My calves, shins, feet, ankles, hips, back, ribs, head, ears, shoulders – all owned by pain. Which way is home? Right, no wait, that’s left, right is the other way. Isn’t it? I’m not sure, but head out anyway and things look sort of familiar so I keep going.

I am wondering if you think me a fraud – maybe an attention-seeker or hypochondriac. Who has this many symptoms? You always try and tell me I am just like you – that you forget things, your joints ache, you feel tired. But, you are going to work tomorrow. I cannot safely work as a nurse. I tried for a while but procedures I’d done a thousand times were impossible for me to complete in the right order. I’m still not sure if I filled those last few pill boxes right. You mentioned what you were making for dinner tonight – a new recipe. You will be able to follow a recipe today – even after a walk in the park and a conversation. I tried to make an egg this morning – prepared my skillet, cracked the egg, and opened it onto the stove top instead of into the pan. I watched it lying sunny-side up and battled to understand its cold, runny state. Something was wrong, but it was a good minute before I found the answer and formed a plan to clean up the mess.

I’m not like you, and for some reason I can’t quite understand, I really need you to know that – to cut me some slack, to lower your expectations. Instead, I feel as if I lie in a coffin made of frosted glass. I keep trying to tell you that I am trapped, that I can’t move, that it hurts, that I am losing my way and my mind, but you can’t quite see me. I’m not clear to you. So you keep going, and I give up sometimes and lie still. I stop trying to communicate my struggling and wonder if maybe you’re glad I’m in here – where you can’t really see or hear me. Maybe that’s why you keep trying to tell me I’m OK. Are you trying to feel more comfortable with my decline? Maybe you are sad over my failing health, but don’t want to be, so you keep slinging a positive attitude my way – but it’s just bouncing off this glass lid, not because I don’t want to feel positive, but because this lid is real.

Isolation is worse when other people are present. If I were trapped in this coffin and no one was around, I would not hope for an understanding, empathetic friend. But every time you walk by, I hope. I hope you will be sad with me when I’m sad. I hope you will encourage me, not by denying my illness, but by acknowledging it and knowing I cannot walk far or stay awake too long or always understand your words. I hope you will be in this box with me as best you can so you will know this war is real, my enemy is strong, and even though I win a battle now and then and have a good day, I have a long way to go before I win this war, and likely, I will never have a clear and final victory; there may be scars. I may have physical pain the rest of my life. My brain may never work as well as before. Even if I hike again, an overgrown path will likely always cause a cold sweat and rapid heart rate. The tiniest tick will swell in my imagination to a giant disease-ridden monster and the uninhibited joy of the trail will never be the same.

But the most prominent scar, I think, will be the knowledge that I came through a war – that my whole life was changed, became a fight, that for years I lost much, and you will never know. For you it will be as if nothing happened. A majority of the medical profession, of which I have been a part for 30 years, will not believe me. I fear the isolation I felt in my illness will continue after I am well. I will have a membership in a secret club to which I will never really want to belong. Those unwelcome members – Borrelia, Bartonella and Babesia – they’ll always be lurking in the dark corners, blowing poison smoke, never gone completely, always looking for opportunity to rise again. There will be others like me, my comrades in arms, who will know without words how I feel because they have felt it too – they will be keeping their eyes on the enemy the rest of their lives, just like me. But not you. We are close – maybe friends, spouses, sisters, or maybe you are my child or parent, but you will never really know. I wish you could know for my sake and for others like me, but I hope for yours you can remain a pacifist – safe from this chronic, destructive war.

This post originally appeared in You & Me Medical Magazine.

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