by Sarah Krivos

It can be difficult for other people to understand what Lyme disease does to you, because in most cases, your outward appearance doesn’t change radically. Here’s a small glimpse into what life with Lyme looks like.

It’s feeling helpless and lost when you realize Western medicine has failed you and typical doctors are clueless as to how to help you heal. It’s going to see every single holistic or functional practitioner and realizing that 95% of them won’t be able to help you either.

It’s doing countless hours of your own research, fumbling around on the internet praying you stumble upon a magic unicorn to help you. It’s finding someone who actually does know what they’re doing and putting all of your faith and trust in them that they can help guide you back to health. It’s coming to terms with the fact that you are your own healer.

It’s self-harm because you hate yourself and who you have become. You want to physically feel the emotional torture you are feeling on the inside. It’s looking at the letter Y while your brain keeps telling you it’s a W.

When medicine has no answers

It’s having extreme vertigo and getting out of breath walking your daughter to school right across the street. It’s having your husband cut your hair in the shower because you can’t stand seeing the brittle strands swirling down the drain in clumps, and you’re too embarrassed to go to the salon and have anyone else touch your whisper thin locks.

It’s drinking bone broth for days on end because you’re on such a restricted diet and afraid to put any food in your mouth. It’s having eye floaters so bad you feel as though you’re watching life through a screen. It’s having panic attack-level anxiety so you don’t trust yourself to get in your car and drive.

It’s snapping at anyone who crosses your path – including your children – because how dare anyone need just one more thing from you when you’re clinging so precariously to your own miserable existence? It’s not sleeping for three months straight because your nervous system is unable to calm down and feels under attack 24/7.

Living in fear of your own symptoms

It’s feeling like you’re a creature right out of a sci-fi film because you can feel parasites moving in you and your brain short-circuiting because of the bacteria. It’s hovering in this nightmare-like state between life and death, most days preferring the latter because you can’t see even a glimmer of light at the end of the tunnel.

And then … there it is. The slightest pinprick of light, so dim that you barely even register what it is. So you keep going. You keep fighting. And something shifts.

You make the decision to change your mind. You start reading books about spontaneous healing and how the mind really does have the capacity to heal the body. You think it’s a bunch of BS at first, but figure it’s worth a shot. And something shifts even more. You’re able to calm your nervous system down, just the tiniest bit, but it’s an improvement. And then life with Lyme starts looking different.

It’s showing up for life even when all you want to do is stay in bed. It’s being present in the moment rather than focusing on the pain. It’s saying affirmations to yourself daily (or all day long) because what your mind believes, your body follows suit.

Relearning how to live

It’s accepting this is only temporary and is meant to teach you something. It’s finding faith that you had lost for so many years and thought you would never regain again.

It’s discovering that emotional trauma is held in the body and has the same capacity to hurt you as physical trauma does. It’s realizing that not feeling your feelings (because, I mean, ewww… feelings), you make yourself sick. It’s coming face-to-face with these feelings and emotions and taking the time to sit in your pain and feel your feelings. 

It’s feeling the pain of abandonment from having a biological mother who didn’t want you and gave you up for adoption. It’s feeling the grief your body still holds onto from your 16-year-old self losing your mother to cancer. It’s feeling the terror your body still holds onto from your 24-year-old self losing your brother to suicide. It’s feeling the embarrassment and “failure” of your 37-year-old self losing your health.

Reconnecting with the people who matter most

It’s feeling, it’s feeling, it’s feeling. It’s doing the hard work now because, God willing, you still have a lot of life left to life. It’s reconnecting with your husband and children and knowing they will always remember how you made them feel. Not how you looked, not how clean your house was or that all the laundry was folded, but how you made them feel.

It’s drinking your celery juice every morning because it is healing you. It’s sitting in your infrared sauna and doing coffee enemas when you would rather do just about anything else because they are healing you. It’s saying no to processed foods and sugar because the organic, mostly plant-based diet is healing you.

It’s seeking out energy healers, meditation, holistic healing ways that probably seem a little “woo-woo” to most but are healing you. Life with Lyme teaches you something every day, and you slowly realize that you have the power to heal yourself from the inside out, and that you will win this battle.

I published my memoir Silver Scars to help others healing from chronic illness know that they are not alone, that someone else understands what they are going through. For years, I equated sickness with brokenness, and only when I began to heal was I able to untangle those threads of mistruth I believed for so long.

Kintsugi is the Japanese art of repairing broken pottery by mending the areas of breakage with lacquer and powdered gold or silver, highlighting the imperfections instead of hiding them.

It encourages fixing rather than discarding and represents the idea that we can heal and become stronger through our challenges and brokenness. I realize now that sickness made me more beautiful by covering me in silver scars.

Sarah Krivos lives in Wisconsin.