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What I Wish the Doctors in the Hospital Understood About Lyme Disease

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I’m writing this from my hospital bed on the 13th floor of a well-respected hospital in Chicago.

I’m lying here thinking, Why do they have 13th floors in hospitals, anyway? At this particular hospital it happens to be the infectious disease floor. It’s my third visit to this floor; the friendly daytime nurse even recognized me.

Chronic Lyme disease is a controversial illness with little to no acceptance or understanding in Western medicine; but when we become acutely ill, we still have to go to the conventional emergency room or hospital. There are no integrative medicine emergency rooms… yet.

There are many serious symptoms of Lyme disease that could land you in the emergency room or the hospital, like seizures, paralysis, fainting, strange rashes, and the feeling of having a heart attack. For me, it’s been a persistent bone infection.

Many Lyme patients avoid the emergency room out of the fear of being misdiagnosed or mistreated, because there is a lack of understanding of our complex illness. But even more so, we are afraid of being judged or told it is all in our head.

In the emergency room yesterday, the well-intentioned doctor listened and took notes on my complicated history — the years of autoimmunity, the bone infection, the eventual Lyme disease diagnosis — and then sweetly asked, “Are you an outdoorsy person? Where would you have been exposed to Lyme?” We are asked this all the time, even though the CDC published a study that ticks carrying Lyme disease are in almost half the counties in the United States.

When I am in the hospital or meeting a new doctor I have to make the decision whether or not to tell them about my Lyme disease. Do I tell them and risk being dismissed, or do I not tell them and risk hiding important information from a doctor?

Many Lyme patients choose to go with the second option, because it is just too painful to be told the illness you battle every single day simply doesn’t exist. Lately, I’ve been going with the first option. I have this honesty complex, and I feel like eventually it will come out; I don’t want to look like was hiding something.

The four-person infectious disease team crowded around my bed, and I felt all their eyes on me. A young resident asked the first question, “Why are you taking that medication?” Then, the head of the department asked in a condescending tone, “What is the name of your Lyme specialist?” A resident, who was about my age, said, “You’re the healthiest looking person we’ve seen all day.” I guess she was trying to make me feel better.

They wrapped up their questions and then stepped outside my door. I tried not to listen to what they were saying. I heard someone mention “looking up symptoms on Google” and “sending blood work off to unverified labs,” then it came, laughter, right outside my door.

I am a well-educated, intelligent person. I approach every problem with the utmost care and consideration. I had to find my diagnosis on my own with no help from conventional medicine. All I could do was sigh and tell myself, “They laugh at what they don’t understand,” and remain grateful and humble for the help they can provide me with my current issue.

My message for doctors and medical professionals is simple: Use your empathy training. Put yourself in your patient’s shoes and think about what they may be feeling.

Imagine going to a place for help in a desperate moment, only to be told what you are have doesn’t exist.

Imagine being told your terrifying symptoms are “all in your head.”

Imagine being afraid to tell a doctor your diagnosis.

Imagine knowing the only doctor who can help you in an emergency probably doesn’t know anything about your illness.

Imagine being dismissed because you don’t look sick.

Imagine being made to feel ignorant about your illness when you’ve spent countless hours researching it.

Imagine being laughed at by a team of doctors.

I am capable of the same empathy. I understand the weighty responsibility doctors have to follow certain guidelines. To that I will ask two things. One, please educate yourself on Lyme disease and look at the controversy from both sides. Two, try saying something like this: “I trust you understand your body, but I see things from a different perspective. Let’s discuss how we can work together on this.”

While I was finishing this article there was a knock at my door. A hospital volunteer walked into my room with a beautiful vase of pink lilies and carnations from the “Random Acts of Flowers” program. I was reminded of the overwhelming kindness of people. My doctors here at the hospital want me to get better. Though their approach is not ideal, our goal is the same.

Originally published: August 29, 2016
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