D’s Lyme Time

Living with Lyme 

Trying to explain what it is like to have Lyme Disease is like explaining what getting a tattoo feels like to someone who doesn’t have one. It’s difficult and very hard to explain. For those who do not have either, I am going to put in my best words of what a day in the life of a ‘Lymie’ is like.

Lyme disease is known as the ‘great imitator’. Lots of people with this disease have similar symptoms to diseases like Multiple Sclerosis, Parkinsons or ALS, which some of us have actually been diagnosed with before getting the correct diagnosis of Lyme.

The array of symptoms that come with this disease is astronomical. We wake up everyday with a sense of fear, because we do not know what our day is going to be like. We wake up with thoughts like, ‘Will I be able to walk down the stairs today?’ or, ‘Is my nausea is going to be so bad I won’t be able to eat?’ or, ‘Will I have to cancel on my plans last minute again?’

But then there are the days where we cannot get out of bed at all. Our pain might be so bad that it hurts to lift our head up off the pillow, or maybe our anxiety is so heightened we cannot bear to face another human being. These are just some of the fears we face every single day.

There are simple tasks that we used to take for granted like grocery shopping and household chores. Those are just a couple of things that can be extremely difficult for someone with Lyme. Standing for too long at the sink while washing dishes hurts the knees, hips and arms for those who have pain. Sweeping the floor can be breathtaking (literally) for those with respiratory problems. Laundry? Seems so simple, yet can be so damn difficult. Walking through the grocery store can trigger many symptoms such as pain, anxiety, vertigo, you name it. And it is different for every single one of us.

The absolute hardest thing about living with this horribly debilitating disease is that most of us look completely normal on the outside, while on the inside, we are holding back tears and dying to be somewhere comfortable where we can relax. A lot of us have become really good at going throughout our days in pain, which can take a toll on our mental state. Depression and anxiety are probably the worst things that come with this disease. When our mental health is compromised, it affects the rest of our body. 

For those who suffer from chronic Lyme (yes, it is a real thing), the damage done to our bodies is horrible. My hair is thinning and falling out, my joints might never be the same and my brain hasn’t felt normal for almost a decade. I have come to realize that If i went undiagnosed for much longer I probably wouldn’t make it to my 30th birthday.

Living with Lyme can be extremely lonely. If you know someone who suffers from it, or any sort of chronic disease, be patient, be kind and don’t be afraid to ask questions. Sometimes a little love and understanding can go a long way.

By Dana Lee

Dana is 27-years old and has been battling this disease for 20 years. She describes herself as a Chronic Lyme Disease Warrior. You can read more about her journey by clicking on the links below.


One thought on “D’s Lyme Time

  1. Excellent article + excellent blog!

    Since I was diagnosed with Lyme 26 years ago, I appreciate finding out how others cope. Your posts are illuminating. Although dealing with Lyme has been difficult, I consider myself lucky that I got treatment early on. This early treatment definitely helped me to lead a somewhat normal life + still work.

    In addition, reading inspirational info on how to deal with Lyme, such as on this blog, has helped much. Keep up the good work!


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