Looking “Normal” with Lyme Disease

A lot of people are confused when they see my photos on Facebook. My mom has talked about how she will be talking to someone and they think I am healthy, because I look fine. The truth is, is that when you are chronically ill, you have to push yourself and do something fun every once in a while. When I go out and do my modeling and acting, it takes every ounce of strength from my body. I get really sick afterwards, but it is worth it, because I get to have one fun day. I get to feel human and worth something. About a month ago I had a photoshoot. Afterwards I was so tired and sore I couldn’t move. My back hurt an insane amount, that I  couldn’t sleep. But to me, all of the pain is worth it.

Often when I tell people that I have Lyme, they say, “oh, but you’re so pretty” or “well you’re still beautiful.” That doesn’t make me feel any better. Compliments are nice, but not when you just told someone how sick you are. It makes me feel like my disease is invalid. I know they are just trying to be nice, but it actually makes me feel worse. So if you ever encounter someone with an invisible illness, never say “at least you still look beautiful” or “at least it’s not Cancer.” When you say that, it makes it seem like my disease doesn’t matter. Like it’s not bad enough to be validated. Just because I don’t look sick, doesn’t mean I’m not suffering. What does sick even look like?

The best things you can say to a person with an invisible illness are, “I believe you” or “tell me about it.” When people say something like this, it makes me feel validated. It makes me feel less crazy. This is very important for a person with an invisible illness. When people ask about my disease and want to be educated, it makes me feel amazing. It makes me feel like they care about me. If you care about me, I also want you to care about the disease that is effecting my life so much. I think that most patients with an invisible illness can relate to having to deal with people not understanding how you can be so sick, yet look so “normal.”

It’s hard to be so sick and look “normal.” People always think you are faking being ill. I am really sensitive, so I can’t take a lot of medications. Some people with Lyme have a port, a picc line, or other things that signal that they are somehow sick. I can’t do any of that. Which in some ways is good, because all of those treatments are hard. But it can also be frustrating not having anything that signals I am ill.

I have to use a cane or wheelchair sometimes, because I can’t walk far distances. We have a handicap placard for our car, so that I don’t have to walk far. I always get confused faces when people see my family get out of our car all walking. I’ve talked to other Lyme patients about being in a wheelchair. I’ve found that a lot of people think that being in a wheelchair is black or white. Either you can’t walk at all, or you can walk perfectly fine. That is not true. Many people in wheelchairs are in them, because they can’t walk far distances.

When I go out, it takes me a while to look healthy. I put on regular clothes (not my PJ’s), I put on makeup, and do my hair. Now I don’t always do this, but when I want to look healthy I do. When I am going to modeling it usually takes me two hours to get ready. That’s crazy! I think that the hardest and most tiring part for me is getting ready. Taking a shower is a lot of work for me. My makeup, to cover up dark circles and dull skin from not sleeping. When I don’t leave my house I am constantly in my pajamas, no makeup, my hair in a bun. I usually don’t take many showers either, because like I said it’s a lot of work. These are some of the things people don’t know. When I am around people I try to be enthusiastic and happy. No one except my family sees me at my worse. I fake being healthy when I go places, because it’s easier. These are some of the struggles I deal with having an invisible illness.

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The Strength of Staying

It was just a normal night. My aunt was coming into town from Dallas Texas so that she could help out. It had been hard on my parents taking care of me while also remaining taking care of everything and everyone else in our house. I had gone to bed and was expecting to wake up and see my aunt in the morning. While trying to fall asleep I started feeling really nauseous, so I decided that I would go downstairs to eat something. I went downstairs and everyone was still awake. My brother, sister, mom, and aunt were talking while standing around the granite top island in the kitchen. My dad had left earlier that day to go on a business trip. I was talking and eating, but not feeling any better. I started laughing as if I was possessed. I started feeling airy like anything could pass right through me. It felt like I was tiny and I was inside my brain. It was like I was a robot and my brain was the control room, it was like I was looking through a glass wall instead of my eyes. Everything around me was bigger and it felt like I couldn’t physically touch it. I don’t remember this, but my mom said that I got really weak and had to be helped up the stairs. I got in my bed and continued to feel ghostly. While lying there I could hear my aunt and mom speaking. I couldn’t speak back to them though, and couldn’t move any of my body. I was trying to tell them to take me to the hospital, but couldn’t get the words out. It was like my brain couldn’t signal my mouth to actually say any words. Then I felt like I had left the earth… I pictured myself holding on to a long hemp rope in a deep black tunnel. If I had let go I would have died, at least that’s what I thought. Then I pictured a different scene. I was standing in a forest that had a small lake. It was at night, so it was pitch dark, except for the moon and stars. I was standing by a tree looking out into the lake. There in the lake, I saw my dead body. I was dressed in an ankle length flowing white dress and floating in the water. I turned to the right and I saw a white light. It was so bright I could hardly keep my eyes all the way open. I didn’t know what was happening but decided to pray. I’m not religious, but I thought why not? It couldn’t hurt anything… so I prayed that I wouldn’t die. Now, this was a game changer for me because when this happened I was suicidal. I realized when going through these different scenes that I didn’t want to die. I thought about all the things I want to do in my life, all my dreams. Then I heard a voice. It was a deep man’s voice. I never saw anyone; I only heard the voice. I don’t remember exactly what he said, but something along the lines of that I had a choice to make. I could go with him and be at peace, or I could keep fighting. I think that this happened to me to show me that my life is important. That even though life is hard sometimes, I couldn’t give up just yet. I’m so glad that that happened because I haven’t been truly suicidal since.

Anyways, after that, I came back and saw my aunt and mom. Then I went back to the other world or whatever it was; I guess I will never know. This happened three times. Finally, my mom decided to take me to the hospital. I still couldn’t speak or move. My mom had my next-door neighbor carry me to the car. When we got to the emergency room a few nurses came out with a wheelchair to help get me out of the car. I still couldn’t talk to them but could understand what they were saying. They put me in a wheelchair and took me to one of the emergency rooms. My mom asked me questions… I blinked once for yes and twice for no. Apparently, I was crying through all of this, but I didn’t even notice. The doctor came in and pinched me really hard in different places to see if I could feel it. When I was finally able to talk I yelled at him. I mean I couldn’t speak or move! How was I supposed to tell him to stop? I had to spend the rest of the night there. They told me that I was fine and asked me to talk to one of their Psychiatric people. I told them they didn’t need to worry. I wouldn’t hurt myself or anyone else. The worst part though was how condescending all of the doctors and nurses were. They said I just had a panic attack. They made me feel like I was crazy, but I knew that I wasn’t. I lay in the hospital bed for the rest of the night. During all of the craziness, my dad had come back from the airport to be with me. Funny thing is I even asked my mom if I could go to school the next day. She said no of course.

I’ll always remember that night. I’ll remember that even if I’m having a rough day and don’t feel like living on, I have things to live for. I have to pick myself back up and keep going. That is my story of what I call my near-death experience. I will never know what truly happened, but all I know is that it taught me a big lesson. Don’t give up!

 

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