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When Your Chronic Illness Isn’t Covered by Insurance

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Having a serious illness is tough in itself. Having a serious illness that isn’t covered under health insurance when you’ve already struggled financially adds another element that will have you drowning at times.

First, why isn’t Lyme disease always covered under health insurance?

I will try to put this in layman’s terms the best I can. Lyme disease is a controversial disease. It’s a battle between the sufferers of this illness versus parts of the medical community. Some members of Western medicine tell us that persistent late-stage Lyme disease does not exist. They tell us that symptoms of Lyme disease will be present within the first two weeks of being bit by a tick. Then an infectious disease specialist will give you a round of antibiotics, and you will never have to think twice about this disease.

While this is the case for some of us, it is not true for all of us. It is possible for the bacteria to go dormant in your body. It can hide and manifest itself into any system or organ in your body. Therefore, symptoms can go unnoticed and not become apparent for months or even years down the line. So where do we go from there?

One of the tests used to determine Lyme, called the Western blot test, is not 100 percent reliable. If you don’t have the right amount of positive “bands” according to the Center for Disease Control’s (CDC) guidelines, you will not be considered to have Lyme disease and may have a difficult time getting treated. We get a plethora of scary symptoms out of nowhere, and our infectious disease doctors and primary care doctors are still not giving us the treatment we deserve. In medical school, these doctors are taught by world-renowned professors. They are taught what Lyme disease is from their textbook standpoint. If these doctors were to treat someone who isn’t CDC-positive, they face getting their license revoked or suspended.

In disgust and disappointment, Lyme patients may be forced to seek treatment elsewhere. The next step is usually going to a Lyme disease specialist, know as a Lyme literate medical doctor (LLMD). These doctors may not take insurance for the fear of losing their medical license. As you are able to infer, this causes huge financial distress.

This brings me to the famous psychotherapeutic question: How does that make you feel?


Growing up, my family and I didn’t have a lot of money. We were considered a lower-middle class family in a nice suburban part of Long Island, New York. My parents are very hard-working and sacrificed everything for me, from the day I was born to now. However, having to struggle financially made aspects of my childhood and young adulthood difficult. There were no college funds, no extravagant presents spontaneously gifted during the year, and there was certainly no new car waiting for me in the driveway when I turned 18. I was fine with that. To be honest, I enjoyed working my way from the bottom and earning everything I have. I wouldn’t have had it any other way. I cannot say I feel the same way anymore. It’s one thing to have to work to earn your way through life, but what happens when you’re too sick to work? There’s no self-earned paycheck waiting for me at the end of the week to pay for my medications needed to stop this illness.

It’s a vicious cycle, one in which those without money must remain ill due to the simple fact of not being as financially fortunate as others. Is it my fault that my family isn’t wealthy? Why am I being punished for not being a member of the upper class? How many other people will have to go through this as well?

Sometimes I wish I were diagnosed with a different disease. Appointments with LLMDs run me anywhere from $250 to $900 per appointment. Now think of how often someone that’s sick needs to see their doctor — at least every six weeks to two months right? That amounts to about $3,600 per year. It’s near-impossible for someone in their 20s to afford it. That’s not even including supplements and any other alternative treatment your doctor finds necessary.

I know stories of people losing their belongings and even their homes over this. No one deserves to be sick and homeless. It’s devastating, it wears your skin thin and robs you of all your money, pride and everything you have earned.

As much as this illness affects me directly, it hurts my heart that much more to know that many others are in the same boat as me. Through sharing this piece of my writing, I am striving for everyone to be well-informed and aware of the truth of this illness. I hope for fairness and brighter tomorrows.

Follow this journey on My Journey Through Lyme Disease.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to 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.

Originally published: February 21, 2016
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