When I Met a Lyme Disease Specialist for the First Time


The recent legislation change in Iowa, which allows doctors in Iowa to prescribe treatment for Lyme disease that is more aggressive than currently allowed by the state’s Board of Medicine, has given me hope that these changes will be massively cropping up in all states sooner rather than later. Doctors who treat Lyme disease often put their licenses at risk, and are some of the greatest heroes in this battle against this vicious illness. What they give is not only hard to find treatment, but also the compassion that we constantly yearn for when surviving Lyme. To me, one of the greatest forces that keeps me fighting is the kindness that my doctor and his staff have given me since I walked in their door.

So many of us have done the doctor shuffle where no one seems to understand our symptoms. Many of us are rejected when the standard three-to-four-week regimen of antibiotics does nothing for us. Our pain and suffering can fall on deaf ears, and so often it feels like no one believes us. The worst for me was the thought that maybe the doctors are right. Maybe it is “all in my head.” To me, the disregard of my struggle has caused me just as much pain as my physical and neurological suffering.

But then, and I deeply hope that we all are fortunate to get to this point, I met a doctor who actually saw me. No, I’m not just talking about seeing me for an appointment. They actually saw me as a person who is in pain and who has been lost in despair for so long. They understood this, and wanted to do their best to fight this battle alongside me.
I remember entering my Lyme specialist’s office with the moral support of my parents and my fiancée. Not going to lie, I was scared, depressed, and with little hope. However, something was different. This doctor actually met me at his office on a weekend (and he does not work weekends) so he could make time for a consultation with me despite his beyond-full schedule.

With a kind voice, he led me into a comfortable room to speak with me about all my experiences. He wanted to know everything: my symptoms, my past year, even what was going on in my life now and how my symptoms were impacting it. The look of understanding and devotion to me as a patient will forever be etched into my memory.

Then something remarkable happened about half an hour into the session that had never happened before: I began to cry. It wasn’t just because I was in so much pain, but because a doctor was finally listening to me. I initially apologized because my emotions had been lost with previous doctors, but his response was so different than all the others. With a look of understanding, he told me: “It’s OK. Cry if you need to.”

So, I listened to him and cried as I described the hell I had been through for so, so long. For the first time, I felt relieved. His treatment of my illness and myself has a person since then, has been one of my greatest rocks in this battle.

I know I was lucky to finally found someone who would give me the medical care I need, but I wish I didn’t to have to say I was “lucky.” I know that hope can be so fleeting, and I also know firsthand how overwhelming it is to hold on. I’m not claiming it’s easy at all, but please keep clinging to hope and keep searching for a good doctor. The fight for medical care is a perilous one, but it’s everything, and absolutely worth the fight.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Jovanmandic

TOPICS
JOIN THE CONVERSATION

Related to Lyme Disease

Woman eating lunch alone.

When People at Work Avoid You Because of Your Illness

You want to say that you just imagined it, that the room did not suddenly become quiet when you walked in. But you know that you didn’t imagine it because this has happened before. You were out sick last week, like half of your office coworkers, but with one difference – you didn’t get better. [...]

How Violin Music Has Guided Me Through the Dark Times of Illness

I don’t know what time it is, hell, I don’t know what day it is. All I know is that it’s dark, the cold breath of night hanging over my windows. My rib cage is rising and falling, automatic, the bones sharp and bendy. I can’t see much and my body is contorted with pain, [...]
woman sitting on her bed and looking out the window

What Life as a 'Functioning Lymie' Looks Like on Days You Don't See Me

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for others – just a [...]
close up photo of a woman's green eye

A Peek Inside the Brain of Someone With Advanced Lyme Disease

A peek inside my Lyme-filled, neurologically impaired, frustrated brain: Pain. Unbearable pain. Like a pack of wolves is ripping your legs to shreds, piece by piece. Like someone took a thousand hammers to them, smashing away the ligaments and muscles. A type of pain you cannot see from the eye. You look normal. Healthy. We [...]