May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!
Editor's Note: The following was originally posted on Cassidy's personal blog, dated October 2016. Check out her profile below to learn more of her Lyme disease story.
It happened to me last night. The thing I have dreaded for the last four and half years. The thing I have been fortunate enough to have not experienced, 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 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 my face droop, and I knew I was about to get paralyzed.
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 upstairs 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 thirty minutes before the tingling started again. I was paralyzed 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 eighteen-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. We decided I would sleep it out and if my mobility was still 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.
After trying to sleep for a little while, it started getting harder to breathe and I started shaking and feeling different. I told my parents that I think I needed to go to the ER, and when I comply to going to the hospital, you know I feel bad. 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. This doctor just had a rude persona about her. I could tell by looking at her that she doesn’t believe in chronic Lyme and 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, she just said they would keep me there until it came back. She also said that normally she would treat this with anti-anxiety meds but that I didn’t look anxious, I looked “pretty calm and stoic.” This makes ZERO sense. If you think this is anxiety but you just said I don’t seem anxious? What?!
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 get the hair out of your mouth or go to the bathroom alone? 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, but that 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 dragged/walked out of there.
I was paralyzed for over four hours. My mobility 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 their disease isn’t real or is all in their head. Sure, when you are a little kid you fake a stomachache to get out of school for day, but not for four 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. If I hear one more person say “Lymes,” I’m going to scream. (It is “Lyme” like a “Lime.”) 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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Cassidy Colbert has been battling chronic Lyme disease for over six years. She now dedicates her time to advocating so no one else feels the burden of this horrible disease. Want to know more about Cassidy? Find her on social media!