To the Person Diagnosed With Lyme Disease Who's Not Getting Better


I was you once. Two and a half long years ago.

When you finally receive the diagnosis of chronic Lyme disease, it may feel like a huge weight has been lifted from your shoulders. You’ve been in pain and struggling for so long with no answers. Now that you have one, you may think life will get easier, and it may for awhile now that your condition has a name. You feel vindicated. You can now tell people you have Lyme.

But slowly the sad reality sinks in. You are not getting better despite the diagnosis. You are not being cured despite the medicine you are given. It can feel like you are walking on quicksand.

Days go by, and you struggle to find the reason why you are not getting better. You decide to become an expert on Lyme disease, but your brain fog and memory loss make that task difficult.

So you take what you are given, try to eat better and look for the light at the end of the tunnel.

But there are no concrete answers. Welcome to the Lyme Zone, a dimension where bright sights and loud sounds can hurt you, where finding a doctor who can actually reduce your suffering can be like finding a needle in a haystack.

Your family and friends may become distant as you are often sick and unable to participate in life’s pleasures. Your relationship with your spouse and kids may become strained. They miss the old you, and you wonder if she will ever come back.

I know what you are going through. I am so sorry for all of your pain. I wish I could take it all away.

I am here to tell you though it is a long, horrible road, you will feel better. You may not be cured, but you will feel better. Keep track of how you are feeling, and when something makes you feel even the slightest bit better, let your doctors know. It may set you on the right track. If a doctor fails to help you or listen, find another.

You can have a million ups and downs, but never give up. Take each tiny victory as a sign you are on the right path.

As hard as it can be to concentrate and enjoy things, find something you can tolerate to pass the time. Take up quilting, learn to play an instrument, volunteer, learn a new computer program, play solitaire, start journaling or blogging. I have always written poetry, and I now have some Facebook pages and blogs to pass the time and release my emotions. I try to make a difference in other people’s lives, though I may struggle to make it through the day.

Do what makes you happy when you can, and look forward to the next time you are able to do it. Have something to look forward to, even if it is only once a week. Get out of bed and make yourself look fabulous whenever you have the energy to. Life has a purpose. Find yours.

Watch and follow positive stories and role models. People who provide the light and perform good deeds can help us find the good in life. They can help us get through the torment that Lyme disease puts us through. They can help lead the way to a brighter day.

Think it. Believe it. Feel it within every inch of your soul.

And it can happen.

You are my hero.

You will get through this.

You are worth it.

I believe in you, so please start believing in yourself.

I’m on your side. I’m right here fighting beside you.

You are not alone.

You can do this.

Now let’s get started.

Let’s kick some Lyme a**!

A version of this post first appeared on Poetologie.

 The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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