Chronic Lyme: The Top 3 Things People Don’t Understand


While Lyme disease has become widely known for its being caused by ticks and its variety of symptoms, few truly understand what Chronic Lyme is and how it affects people every day.

Here are the top 3 things many people don’t yet understand about Chronic Lyme:

1. There is continuous debate over whether Chronic Lyme even exists.

Chronic Lyme refers to the lasting symptoms such as fatigue, joint pain and neurological issues that continue to occur or flare up after a person has been treated or mistreated for Lyme disease.

This article argues that “there is no reproducible or convincing scientific evidence of any relationship between the symptoms and Lyme disease” and that complaints of Chronic Lyme are both subjective and indicative of other diseases (such as depression, anxiety, stroke, Alzheimer’s) There are many, including physicians, who believe the evidence is pseudoscience made up merely of cherry-picked articles.

Dr. Lynn Webster shares that “many people with Lyme disease talk about the stigma attached to their suffering, and the fact that most of their doctors have insisted that their condition was psychosomatic.”

As if it isn’t already difficult enough to deal with chronic pain, the constant doubt and questioning causes many Chronic Lyme patients to feel even more hopeless.

2. Chronic Lyme treatment options for can be limited and not definitive.

woman with chronic lyme touches her head in painTesting for Lyme often results in false-positive or false-negative results, and it could potentially be years before we see that changing. This can delay treatment or alter it altogether. If symptoms continue to persist after the initial round of antibiotics, there is not another official treatment plan in place, other than taking long term antibiotics, which is controversial.

Those suffering with Chronic Lyme spend thousands of dollars, often visiting 15 to 20 doctors before they find a treatment plan that works for them—if they ever do.

Some Chronic Lyme patients have looked to herbs and supplements to help treat Chronic Lyme, and others have taken even more extreme measures such as hyperthermia treatment, intravenous infusions of hydrogen peroxide, stem cell treatment and electric shock treatment.

Another treatment barrier can be how expensive treating Chronic Lyme can be. Huffington post writer David Michael Conner shares how his body has responded well to to various treatments but that not all patients can access or afford these treatment methods. He goes into more detail, as well, explaining how politicized Lyme disease and its treatment has become.

3. There is a lot of shame centered around chronic illness.

In the Handbook of Social Studies in Health and Medicine, Kathy Charmaz explains that “experiencing chronic illness means much more than feeling physical distress, acknowledging symptoms, and needing care. It includes metaphor and meaning, moral judgments and ethical dilemmas, identity questions and reconstruction of self, daily struggles, and persistent troubles.”

People living with Chronic Lyme often feel ashamed that they cannot do what they once did. However, the shame often comes from others, as well.

woman with chronic lyme stares at her necklace with sadnessPeople often do not understand why the person they once knew is suddenly different and sometimes, unknowingly, make comments or assume that the person is pretending or seeking for attention.

If a person broke their arm, would you tell them they were just pretending?

“You’re lazy for not opening that door with your broken arm.”
“You’re wearing a cast for attention.”
“Your arm would heal if you just tried a little harder to use it.”

Most people would never say these things to somebody whose pain was visible and understandable. So why do people continue to say things like this about chronic illnesses?

The next time you meet someone with Chronic Lyme, you may want to consider how much they are dealing with before assuming their symptoms are fake or that they are just being lazy.

Most people are trying to understand, and the LymeNow community appreciates those who continually support our community of Chronic Lyme warriors.


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