*Insert Sympathy Card Here*


Have you been diagnosed with Lyme Disease? It’s entirely possible then that you are experiencing some fears, particularly these 3 common fears Lyme Disease patients experience. That’s OK. Natural, really. It’s not uncommon for anyone who recently received the dreaded report of a newly diagnosed chronic illness, to fears the unknown.

You might have several questions and concerns, that only your physician would answer. However, I am going to address 3 common fears that often come with the initial diagnosis of Lyme Disease, and possibly other chronic diseases. Feel free to share this information with others, if you find it helpful.

Fears Lyme Disease Patients Face

Unexplained and Cryptic Symptoms

Let’s start by saying, you are not going insane! The symptoms that often come with Lyme Disease can be cryptic, bizarre, and very hard to explain. It’s difficult to understand why you might be feeling lousy, yet can’t quite put a label on it. Tired? Yes, but maybe you have been staying up too late, right? Aching? Well, sure…everybody does after exercising or using muscles they haven’t in a long time, right? Headache? Must be the weather. At least that is what you used to think, before being diagnosed. Flu-like symptoms would be much easier to understand, if it weren’t for the additional and peculiar symptoms that are also happening to many patients.

Fears of Lyme - it's a rollercoaster

Compound the yuck feeling above, with symptoms you can’t quite put a finger on, and it could have your head buzzing, mind wondering, or on an emotional rollercoaster. Or, wait…are those symptoms, too? You bet.

Fears that many patients have are that they will be experiencing symptoms unexplainable to both loved ones, and the medical field. If people have never experienced these oddities themselves, it might be quite the conundrum to help them understand. I liken it to trying to explain a certain sound to the mechanic that they haven’t heard before, and can’t hear. Only you have heard it, and can fully understand what it sounds like.

Fears - being unheard

So, the good news is you don’t have to worry about your sanity. You are not alone (we’re all a lil mad, no?). Perhaps the only people who could completely understand are those who also have unexplainable symptoms. It would be beneficial to find a support group if you continue to feel as though something, other than Lyme Disease, is wrong with you.

Explaining the Unexplainable to Those Who Need Explanation

So, how do you explain the unexplainable? To some, you don’t need to, because it’s none of their business. Just because you have a chronic illness, doesn’t mean that everybody has the right to know what is going on with you. It’s up to you who you choose to share your health concerns with, and only you. And if you do share and they’re reactions are unsatisfying – don’t worry too much – this is your journey and self-compassion will come in handier than any outside support.

Fears of Lyme - being judged

Having said that, it could help you considerably if your loved ones understand Lyme Disease, at least the best they can. Considering how complicated this disease is to understand yourself, this might be a challenge. But, by now, you have probably done a lot of work for yourself, by researching, reading, and listening to your medical team. So, share what you know with them.

Here’s just a few ideas on how you can do that:

Buy a book

Find a book that is an easy read to help explain the symptoms, the treatments, and what it’s like to live with Chronic Lyme Disease. Try Believe Me: My Battle with the Invisible Disability of Lyme Disease – it’s Yolanda Hadid’s story, which I kind of figure will encourage their interest since it’s not just about Lyme but a celebrity *gasp*.

Fears - that celebrities matter more :P
Illnesses are more interesting once the celebrities start talkin 😛

Print out articles

There are many different sites on the Internet that provide articles or forums for discussion groups. Find one that best fits the information you are trying to describe. Infographics make things a little more interesting.

Bring Back-Up to a Dr.’s appointment

Invite a loved one to go with you to a doctor’s appointment, and give them permission to ask questions. Hey, get them to take some notes, too!

Be open to all questions

Don’t shut down. If you are not willing to answer questions, they will continue to be in the dark about your chronic illness.

Fears with Lyme - being misunderstood
this is kind of harsh, but I like a little bit of tough love

Understanding Lyme Disease for the patient can be grueling enough…and you are living it. So, be patient if you have someone in your life who is having difficulty understanding what it’s like, when they are only able to observe from the outside.

Unsure of When You Will Feel Better

We’ve all had a head cold, or the flu at some point in our lives. And, even if it’s a new strain of flu, people around us have probably had it, and can give you a pretty good idea of how long it will last. We can tolerate it better, when we know what to expect, when we will be able to get back to work, if we will be able to attend that birthday party, or just sleep better.

Fears with Lyme - it will never end

However, it’s far more complicated with Chronic Lyme Disease. There is so much uncertainty when it comes to most everything related to this disease, including when you will be feeling better. First, you probably don’t know too many people with Lyme Disease. And second, every case is different. You might be feeling better in a few months, a couple years, or maybe…not ever.

There are fears, and then there is hope
Worst case scenario, you’re dead. Every day you’re alive is another day your body is still fighting. It would be pretty great if we’d appreciate that at least once a day.

Certain factors will play a role in when you will feel better. These include stress, accumulation of toxins, gene mutations, coinfections…and the list goes on. But, even for the worst-case scenario, there is hope and treatment. Look to your professional medical team, support groups, and the massive amount of information flooding the Internet for ways to best cope with your unique symptoms and treatments. If you don’t know where to start with a Lyme protocol, start here.

It’s chronic. But, it doesn’t have to take you down for good.

Please share this if you know anyone who can relate.

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4 thoughts on “3 Common Fears Lyme Disease Patients Experience”

  1. Fear that I will never recover from that is sometimes overwhelming. Fear I will never be able to just walk without pain again. After 8 months of treatment and not even inch of improvement, feeling like wreck most of the time, asking why the hell this happened to me.

    1. It’s always easier when something is temporary. And sure, “everything is temporary” as is life itself, but it would be wonderful for you to find relief, Jimmi. Which part of you body is in pain when you walk and what have you found that helps?

  2. On day I wake up with huge pain in my foot, it appeared out of nowhere. Done lots of tests, trying many methods but nothing worked and no one was able to say what’s the cause. Few moths later something similar started to happen in my knee, again all tests showed I’m perfectly fine and nothing is wrong with my knee. Standard lyme tests didn’t prove it, only LTT test from Germany came out positive for lyme. I gave up seeing doctors at some point because they know pretty much nothing about lyme in my country… I started using essential oils, various herbs, bioresonance and all those therpapies results in very strong herxes so I’m pretty sure some nasty bugs are there. For pain the only relief I found is by using drug called meloxicam. I tried not to use it for a long time but didn’t find a way, the pain is too strong when I stop. The worst thing is that inflammation in my body seems to be getting worse, I have some pains in the back now which I haven’t had before and there is no improvement from therapy or at least I can’t see it.

    1. Hmm, based on where you say the pain is and has evolved to, I wonder if this is a muscuskeletal issue. I think everything in our bodies are connected and that a chronic condition like Lyme can affect this as well. Have you seen an applied kiniseoligist before? Adjustments can make a difference with pain in ways that seem unconnected. Hope this suggestion has some merit for you.

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