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A Small Glimpse Into Living With and Healing From Lyme Disease

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Editor's Note

If you struggle with self-harm, experience suicidal thoughts or have lost someone to suicide, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741. For a list of ways to cope with self-harm urges, visit this resource.

Many people have reached out to me recently and have either thanked me for being open about my health journey with Lyme disease or have asked for help themselves or for someone they know. It’s difficult for others to understand what Lyme does to you because for most people, 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 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. 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 so many strands fall out and you’re too embarrassed to go to the salon and have anyone else touch it and see how much hair you are losing. 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. It’s feeling like you’re a creature right out of a sci-fi film because you can feel parasites moving in you and can feel 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 you feel like you just want to 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. 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. 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. 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.

So here you are, in all your discounted yoga pants glory, and you’re finally starting to accept yourself. Life with Lyme teaches you something every day and you feel grateful you get the chance to share your story.

Photo by Riccardo Mion on Unsplash

Originally published: December 4, 2019
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