*Originally published 10/3/16*
It happened to me last night. The thing I have dreaded for the last 4 and half years. The thing I have been fortunate enough to have never experiences, until last night.
Last night, a doctor told me my illness was all in my head.
I have been feeling the same lately- not getting any better, but not getting any worse either. On Saturday, I went to Baltimore to stay with my brother for the night. I was feeling okay. We walked around a little bit and went out with his friends. I finally went to sleep around 2:30, which was actually the earliest I had gone to sleep all week because my “painsomnia” was awful all week.
I had a great time! I danced and got to feel normal for a night. I was tired yesterday during the day, but not near as bad as some days. I drove home and just hung out with my sister for a little while. My eyes were hurting and not focusing, but other than that, I felt fine. When I was in the shower I started to feel the familiar face droop; a sign that I have come to recognize as a precursor to temporary paralysis.
I got out and flopped on my bed; within minutes I could not move any part of my body. I screamed for my mom, who luckily had just gotten home. She came up stairs and was trying to keep me calm. She literally had to flip me around so I could breathe better. My dad came up and rolled me onto my pillows so I could try and sleep. I laid there like a doll, only able to move when someone else moved me, for over an hour. Finally my hands came back, and then a few minutes later I could feel my legs, too. I made my way downstairs. I was mobile for maybe 30 minutes before the tingling started again. Luckily, I was in a reclining chair, so my body was in a good position to wait it out, until I had to use the bathroom. My parents basically had to carry me from my chair to my grandmother’s wheelchair to get me to the bathroom. I won’t tell you how the rest of that scenario went because it’s too humiliating for an 18 year old.
My dad kept saying he wanted to call an ambulance and that this wasn’t normal, but I insisted no. I said that they won’t be able to help and they will just tell me I am crazy (I know a lot of lymies who have been told this). They got me upstairs by supporting me on both sides and basically dragging my feet. They got me situated in bed and we decided I would sleep it out and if it still was gone in the morning we would go to the ER. Let me say, this is not the first time I have gotten paralyzed, it has been happening every now and then since December, but never lasted this long. My mom literally had to feed me and put my pills in my mouth so I could go to sleep, because through all this, I still have to take my blood thinner because of my pulmonary embolism (fancy word for a blood clot).
After trying to sleep for a little while, it started getting harder to breathe and I started shaking and feeling different. I finally gave in and told my parents that I think I needed to go to the ER. We had to call an ambulance because there was no way of getting me back down the stairs.
They got me into a room in the pediatric center and the doctor came in.
From the second this doctor walked in, I could tell my case was a burden to her. It was clear after about ten seconds thatshe didn’t believe in chronic Lyme, and I immediately regretted my decision to go. I have seen numerous doctors in the past 4.5 years and I am pretty good at telling if they believe in my disease or not, and she did not. She came in and started asking questions, then did a quick examination. She then looked at my mom and said “well Lyme disease can’t cause paralysis so it’s not that.” We never said we thought it was the Lyme causing this. We didn’t know what was causing this thus why we were at the ER. Then she went on to say that this was “psychiatric.”
Didn’t bother doing any tests, no questions asked, she just said they would keep me there until the feeling came back. She also said that normally she would treat this with anti-anxiety meds but that I didn’t look anxious; in fact, I looked “pretty calm and stoic.” So, her diagnosis was anxiety, although she herself mentioned that I showed no signs of anxiety. Makes sense.
Needless to say, she left the room and I started sobbing. I have never had someone make me feel so stupid, humiliated and worthless. Do you know what it is like to not be able to move your body? To not be able to feed yourself? To not be able to go to the bathroom alone? Or in this particular case, to not be able to hit someone in the face when they piss you off? It is an awful feeling. You are completely helpless, at the will of others. Why on earth would someone fake that?
My mom called my dad and told him to come pick us up because I was not staying in that hell hole. My parents are amazing. My mom went out and raised some hell with the doctors. The supervising doctor came in to talk to me and said that they didn’t think I was faking it was just me manifesting my anxiety in this form. The anxiety that the other doctor said it didn’t look like I have? Yeah, okay. She said that if it didn’t come back by morning they would have neurology look at me but she didn’t think there was anything else going on. So my dad told her they were taking me home. My parents held me up and we drag/walked out of there.
I was paralyzed for over 4 hours. The sensation finally came back, but I still feel weak and the tingling sensation and feeling in my legs keeps coming and going, so now I’ve missed yet another day of school. A hospital is defined as a “place where sick or injured people are given care or treatment,” according to Merriam Webster. Well, I was not given care or treatment. I was given a mental beat down. I do not understand how someone can tell someone there disease isn’t real or all in their head. Sure when you are a little kid you fake a stomach ache to get out of school for day, but not for 4 years. No one fakes being sick, forcing them to sleep through their adolescence. Or watch relationships die. Or feel their dreams slip out of their hands. CHRONIC LYME DISEASE IS REAL. It is mind boggling how uneducated people, especially medical professionals are with this illness.
There is no cure for this disease (yet) but there is a cure for ignorance. We need more research on Lyme. No one knows how bad this disease can be until you go through it, or witness someone up close going through it. I am one of the lucky 300,000+ who get to experience it first-hand. I am not faking. We are not faking. We are fighting. We are fighting for our lives. We are fighting against our own bodies. We are fighting insurance companies. We are fighting the doctors. We are fighting the medical world. Something doesn’t seem right here…
Get aware before more people die. Awareness is key.
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