First off, I’m fine. It was just a bad inner ear infection. But that night was a nightmare for several reasons, the biggest one… Lyme Disease.
I’ve been fighting off thing ear thing now for a few months. It comes, and it goes. I’ve seen the clinic, nothing big. But because it takes me a very long time to recover from something as simple as a cold, I just get used to being uncomfortable.
Everyone around here has been sick with the worst flu season. But I’ve been pretty lucky to avoid it. My close friends understand that if they are sick, I have to stay away. I am constantly washing my hands and trying to stay out of the flu fire zone.
That day I had been feeling a little off. Kinda dizzy, kinda tired. Nothing too crazy. But when I stood up after dinner, the world seemed sideways.
Living with Lyme
Living with Lyme disease, I am constantly aware of my body and my symptoms. Something wasn’t right, and I knew it.
When I walked into the Emergency room, I was in full blown tremors. Usually, my tremors are small, like the one that started off in my eye cavity that night. They can get stronger, but for me, they are just daily spasms. When I reached the desk, I struggled to breathe because the tremors were in both eyes, down my arm, and across my back. I was crying because I was flat out scared of what was happening and wanted help.
“I can do this without your help!“
Usually,I don’t normally go to the doctors for little things. In fact, the last time I went to the emergency room for myself was 18 years ago when I was pregnant with my daughter.
That night I was shocked to see how patients are treated with such disrespect and ignored. The emergency room was empty. And yet I was told to walk back to a bed in the corner, no assistance. I was so dizzy and trembling that I couldn’t get into the bed by myself, which to be honest was both humiliating and scary as hell!
After the nurses took my vitals, an elderly doctor came in and barely gave me a second look. He didn’t bother to look in my ears or run any tests. He just ordered Xanax and wanted to be done with me. But when I spoke up, mentioned my Lyme disease and tried to get him to understand that I don’t react well to certain drugs, this is when I realized I was fighting an uphill battle.
Not every doctor is Lyme Literate
The doctor asked if I had been to the CDC if I had been treated by an infectious disease Dr. and seemed surprised when my husband told him that I’d been diagnosed by Hopkins Hospital and my Lyme was documented by several other doctors. This wasn’t normal, and I needed help. But the doctor didn’t seem interested in doing anything until he was sure that Xanax wasn’t the cure for my “episode.” It wasn’t.
After my tremors started to settle I was able to tell them about my ear pain and that I was supposed to get them checked that day, except I had just gotten busy and skipped it.
Sure enough, once they convinced him to check my ears, they were the cause.
Why is it that it was easier to get antianxiety medications ( and a prescription for them!) then to start with checking my ears and seeing an infection??
Treat everyone with compassion
Why is it that even if I did come in with a full panic attack that instead of helping through it, they blew it off? I was scared and I felt like they didn’t give me a second thought.
I realized the next day that this is what many patients with both Lyme disease and Panic attacks actually go through all the time and I have just been very lucky as to have had amazing doctors tend to me and do their best to help me through.
I’ve heard a few very vocal doctors say directly that they don’t believe in Lyme disease. I usually try to educate them. I realize that not every medical professional is aware of the complexity of this often mysterious and frustrating disease. This was the first time that in what I felt like was an emergency situation. I felt vulnerable and ignored.
Why do I write about Lyme disease?
Because I know there are people out there, just like myself, who feel like they are all alone. They know something is wrong with them, with their body, but science and the medical community is letting them down. I tell my story of living with Lyme disease because I know there are people out there every day online looking for answers, looking for someone else out there who has had similar issues and they want to know that they are not alone in this fight against this disease. You aren’t.
I want you to know that there are advocates out there who are fighting to make sure your voice is heard. You should know that there are people out there that do believe you, who understand that your symptoms might seem really weird to your friends or family, but they are normal for those of us who understand the complexity of Lyme disease.
When I came home, I did the same thing. I went online to understand how Lyme disease can trigger panic attacks. While I thought I understood what they were and hand control of them before, sometimes something as little as an ear infection and vertigo can cause massive chaos. I learned that it isn’t terrible to talk about your panic attacks. But you need to be able to speak up in your own advocacy so that you can get through the panic and get to the main root of the attack.
That night I cried, I felt so alone and scared. Shame was also there because I know that I hadn’t taken the panic attacks as serious as I could have and I too had been frustrated when a loved one had a meltdown and wouldn't “get over it.” when it was convenient to me. Tears came harder when I considered that this disease won’t ever go away. And that in time I will have medical emergencies, I feared that I wouldn’t be taken seriously then either.
You are not alone. Your fear is real. Lyme disease is a lifetime of questions and battles. But out there are hundreds of little sparks in the darkness that are sharing their stories in hopes to bring it all together into a beautiful sky of connected people.
Though it may be hard, just breathe and know that this lifetime may be hard, but it is yours.