Raise Lyme Awareness! Part 1: Living with Lyme Disease

In the last post, I gave a basic introduction on Lyme Disease, what it is and how it affects its victims. It is a very dreadful disease and can completely take over one’s life. That’s what this post is about. How do people cope with Lyme Disease? How can they face every day of constant struggle with pain? There are a lot of answers and a lot of ways to answer them, so I won’t be able to cover everything in this post, but I’ll summarize each aspect as best as I can.

Raise Lyme Awareness! Part 1 Living with Lyme Disease  Tea with Tumnus

I myself do not have Lyme, but I will, again, list the three sources from where I have gathered the following information: 1) a Lyme Disease documentary, 2) websites, and 3) people with Lyme, directly and indirectly.  


Pain for Them is Normal

I have a friend who has Lyme Disease, and she has it bad. Her whole family does too, excepting only one. Being around people with Lyme, interacting with them and talking to them, it doesn’t seem like anything is wrong with them on the inside. They laugh, smile, look completely normal.
            They are completely un-normal. And on the inside is torturing pain. And it’s hard for me to keep this in mind when all I can see is the outside. It’s worse, because no one can understand the pain Lymies have, unless they have Lyme Disease themselves.
            I ask my friend often, “How are you feeling?”, and I’ll get the answer along the lines of “Fine.” Knowing this friend, I know well that this “fine” is “I’m in screaming pain right now.” But Lymies’ understanding of “Fine” is way different from us healthy people. “Fine” is when they are very near the mark of wincing and writhing in pain. Lymies never feel completely well; pain to them is life. They forget what it’s like to live without pain. Their thinking of “fine” is a lot of pain, and “definitely not ok” is “I’m-in-so-much-pain-I-don’t-want-to-live.” They’re not exactly lying to us, you see, because they really do feel fine, compared to other days when their pain is much worse. “Fine” can be felt on the good days, because the good days are nearly just as unbearable as the bad days.
            Saying “fine” is also another way of saying, “I’m in pain, but I can do this.” It’s like a way of reassuring themselves. When I felt like throwing up, I would tell myself, “I’m okay, I’m not sick,” because I felt like that often, but nothing ever happened. It also helps me to get through that period of feeling terrible. But when it has to do with Lyme? Well, the pain stays and never goes away. People with Lyme have a higher pain tolerance; they’re used to it, and at the end of every day they should celebrate getting through those 12 hours of painful consciousness. But they can’t because they’re in too much pain and so tired that sleeping is just as sweet as any kind of celebration. That is, if insomnia isn’t one of their symptoms.


Lyme Tweaks Their Personality and Worsens their Stress

Emotional stress leads to even more physical pain. Lyme attacks pretty much the whole body, including the central nervous system and the brain. Just give them stress, and then their body is overwhelmed; they need rest, they need a break. But you can’t take a break from Lyme. No such thing. Sorry.
            Physical pain also leads to emotional stress. The Lyme infection, while eating away at the central nervous system (I tried abbreviating that, but it didn’t work), causes the victim to feel anger, depression, anxiety, and other negative emotions that otherwise wouldn’t be there if it weren’t for Lyme practically inducing it. These mood changes can even lead to changes in personality as the victims of Lyme have to deal with this Lyme-induced rage. This can take over and control one’s life, but what can they do? This is just one of the reasons why we call it “battling Lyme disease.” It becomes unbearable to the point where they just want to pull their hair out. My mistake, that causes more pain. Take a quote from my friend with Lyme: “Can we just take a moment to appreciate the fact that I haven’t killed anyone yet? That’s skill right there.” (Read more about her struggle with Lyme here. It’s tough material, but you need to read it.)


Treating Lyme Is Expensive

When first discovering Lyme Disease, it may not seem like a negative big deal. “Finally, I’m diagnosed with something! I’ll be able to get treated right away, I’ll take the antibiotics, and after the next two weeks, I won’t have this pain anymore.”
            And then you take the antibiotics and your pain has escalated to ten times worse than it was before. The doctors just shrug their shoulders and refer you to many specialists. You start spending. A lot. Finally financial stress catches up with your emotional and physical stress and it makes life even more unpleasant. But if you stop searching for the right doctor, your condition will get worse.
            So you keep spending for each new doctor that gets thrown your way. Finally, after getting mis-diagnosed for about 100 diseases, you reach the end. You’ve finally found the right doctor (let’s hope he has Lyme so that he knows just what to do) and now it’s time for your treatment: you must board a plan and fly far away to face two weeks of treatment at a special center for Lymies like you. This treatment will help you get better. Finally. Yay!
            And then you look at what it’s going to cost. And you put your head in your hands (or you bang your head against the wall, it depends). You and those of your family with bad symptoms all are going and the price for this one journey to Kansas turns out to be 30,000 dollars. And the three of you may need to go for another follow up visit. Maybe your son should come with you next time. 

The story you have read above is a real story. The Heaths, our friends with Lyme, had to deal with the financial stress (but their current doctor doesn’t actually have Lyme; we can wish). But a fundraiser was set up online so that their friends, co-workers, family members, and even complete strangers could read about their story and give them money … and it has helped. As of May 8, the fundraiser for the Heaths has reached $24,130, and the goal is $50,000. That is huge and I want to say thank you so much for those of you who have both (coincidentally) given to their fundraiser and are reading this right now. We’re nearly half way there, but we’ll get there in time. Woot woot! Wish I’d have brought the confetti.


Lyme Eats at Their Faith.

Oh, yes. Big time. My friend actually wrote a dystopian story based on her walk with God because of her Lyme Disease. The large chasm in her faith that had plagued her for years before even affected her emotional, physical, and mental state, her outlook on life. This was the biggest struggle for her because she was struggling with God: “What did I do to deserve this?” “Why do innocent people like me have to live with pain their whole life?” “Why does God let evil into the world anyways?”
            Humans are incapable of understanding the answers to these questions. Why? Because we are physical beings, living in a physical world. We know nothing of the spiritual, except for what is told us from God and the Bible. How then can we ask such spiritual questions, thinking that they’ll solve our physical lives? What’s worse is my friend received no answer and so she got angry. The Bible had promised her healing, but her body was killing her. And her God had forsaken her … or so it seemed. Just recently, she reached the conclusion that “faith doesn’t always equal healing.” You can read about that in her post here.


What It’s Like to Be Friends with a Lymie

Sometimes I want to become a little cell and dive down underneath their skin. I want to know what it’s really like. Because all I know is just words coming from their mouth or on a computer screen. It’s helped me understand Lyme a lot, but I’ve only begun to actually know what it’s like to live with it.

Lyme can make them anti-social. Or even more anti-social. My friend has always been an introvert, but when Lyme comes along, being alone at home is her special place. It’s always been a victory to interact socially with people for her, and Lyme made it worse; now it’s exhausting. But they really do want to socially interact, to catch up with friends, and talk with people. It just makes it hard because their bodies are so unpredictable when it comes to physical pain.
            Knowing just this has helped me as a friend of a Lymie, and I hope this helps those of you who have friends with the disease as well. Talking to them may serve as a good distraction from their pain, and if they don’t get too exhausted, they will ask to get together, to interact. It’s good for them, and they should not be left alone. Just because they have a chronic illness that drowns them in pain does not mean you should avoid them, thinking that they can’t take it. Come alongside them, help them out. Buy their groceries. Start a fundraiser, because finding the money to pay for all their medical expenses is a pain in the … like they don’t have pain already. Do their laundry, chores around the house. Drive to the library to pick up their holds (wait a minute, that’s a grand idea … can you even do that?). Just don’t barge in telling them you’re going to help them and that they’d better let you. This could make them feel worse and even more deprived of living a normal life: “I can drive myself around, thank you very much.” (Yes, that was a crude exaggeration.)
            Don’t be a burden and let them know that they aren’t a burden to you. Tell them what it means to you to be their friend and that you are happy to help them. Sincerely ask them if they’re actually okay and wait for the real answer. Don’t push them to just get treatment! Because I’ve nearly resorted to that myself. We know that without just the right treatment of Lyme Disease, their body will literally get eaten away from the infection. But they know their body better than we do, and it’s up to them what to do about it.

So help them fight the good fight so they may finish the race with you running alongside. Even if it’s a physical race on Earth. But what is more important is their spiritual condition, because that will completely outlive their physical bodies which are taut and strained, destroyed by infections and disease. In fact, I believe Lyme Disease is a spiritual disease just as it is a physical disease. Not only is it invisible to everyone except for the person who has it, it harms the other Invisible, the spiritual. Living with Lyme Disease spiritually can be more tough even than living with it physically. It’s where it’ll land them in the end that matters the most, and that is when things take over spiritually.
            And physical healing may come. All in good time. Everything is in God’s hands, and He is a good and perfect God, who does, yes, allow sin into this world. It may seem like Lyme tests are all bogus. It may seem like vampires are taking their blood, considering the number of vials. It may seem like there is no good treatment and that their body will deteriorate. But I think G. K. Chesterton said it best: “The most incredible thing about miracles is that they happen.”


I do not have Lyme. If you do, and if anything I’ve said above contradicts the truth you know about living with Lyme, please let me know and I will make changes. I wish to be accurate so that other people can be aware of Lyme Disease and how to help the people who have it.


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