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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Hard to Have Friends with Lyme Disease

Lately I’ve been questioning my friendships. I know that my friends care for me, but it’s hard to have a chronically ill friend. Especially junior year of high school. I understand that my friends have their own lives. They have homework and clubs. I’m happy that they are having fun and enjoying life. It’s hard to be the one left behind though. It’s hard to watch everyone go on with their lives, while you lie in bed. I hardly talk to any of my friends, that I don’t know if I can still consider them friends. I have one friend that use to come over often. She said when I first got sick, that she wanted to be there for me, like her friend had been there for her when she had Cancer. It’s different though… My friend was well within a year and didn’t have to drop out of school. I’ve been out of school for almost a year and a half and there’s not a cure for me. Recently she has been really busy though, so I haven’t seen her. She texts me that she should come over or that she has to come over. I don’t want to be an obligation. I want friends who want to come over, not ones who feel they have to. I’d rather have no friends, then have ones that think of our friendship as an obligation or pity me. Now I don’t know what is going on for my friends, so I can’t speak for them. This is just how it feels on my side. I know it’s hard to be friends with me, because I can’t do much and can’t commit to hanging out. I wish that my friends texted me though. That would make my day. A simple text letting me know they are still thinking about me. I wish they invited me to do things, knowing that I may say no. Sometimes I feel forgotten, like I don’t exist anymore. It feels like everyone has moved on and forgotten about me. I think part of it, is that most people don’t know what I’m going through and how sick I truly am. I wish people understood. Even my closest friends and family don’t get my illness. I guess it’s hard to keep relationships going, that’s just how it is. I’m hoping to meet more Lyme friends, who get what I’m going through. I hope that this helps people know some of my thoughts and feelings. Thanks for reading!

P.S I didn’t know how to end this article. :-p

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What It’s like to Live with Lyme Disease

Most people around me don’t know what it’s like to have a chronic illness with no cure. They don’t know what it’s like to be severely sick, but have people tell you you’re crazy and making it up. To tell people you have Lyme and for them to not think anything of it. To lie in bed all day with crazy symptoms feeling like you’re slowly dying. And to be honest, you are. Most people don’t know anything about Lyme disease, but they especially don’t know that it is fatal. The hardest part about having a chronic disease that no one believes in, is you hardly ever get empathy or support. This sounds horrible, but sometimes I wish I had Cancer. Whenever someone says they have Cancer, everyone always wants to help them and they get so much empathy. I know people who have had Cancer and it’s a totally different experience then what I’m having. Some of them were better within a year. They had support. People believed them. I know that many Cancers are not curable and that it is a horrible disease, but Cancer gets way more attention and empathy. The crazy thing is, there are thousands maybe millions of people with Lyme in the world, yet no one knows much about it.

I remember when I started getting really sick. I couldn’t take showers by myself, couldn’t get a glass of water, sometimes I couldn’t walk down the stairs without help. I felt useless…

Most people don’t know what the symptoms of Lyme are… Now the complicated part is that everyone is different. We all have different symptoms due to different co-infections. Also it depends on how long you’ve had Lyme and how strong your body is. I’ve had Lyme for 9 years and I have a very low immune system.

I probably left some stuff out, because honestly I forget about some of my symptoms. When you have so many things going on for so long you get used to it.

I wrote this so that more people know what it’s like to have Lyme and what some of the symptoms are. Crazy thing is, I’m pretty well off. There are a lot of people who have it worse then I do.

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My Near-Death Experience with Lyme Disease

Hey, so I was just talking with a girl who is trying to raise awareness about Lyme disease. I was telling her my story and my death experience from a little over a year ago came up. I haven’t shared this story with many people but thought that maybe people would be interested in hearing about that night.

It was just a normal night. My aunt was coming in to town so that she could help out. I had gone to bed and was just 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. 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 for no reason and couldn’t stop. I started feeling airy (like I was a ghost). 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. Everything around me was bigger and it felt like I couldn’t physically touch it. Like I said I felt like I was inside a control room in my brain and looking through glass. 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 weird. 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 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 lake. It was night out. I was standing by a tree looking out into the lake. There in the lake I saw my dead body. I was dressed in a white dress and floating in the water. I turned to the right and I saw 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 mans voice. I never saw anyone; I only heard the voice. I don’t remember exactly what he said, but something along the lines of I wouldn’t die. 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 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 the 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 conceding 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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Spring Break with Lyme Disease

Spring beak just started for my siblings. My mom, brother, and sister all went to South Carolina for the week. My dad and I are staying home, since I can’t travel. I don’t feel that left out, but it still kind of sucks to not be able to leave my house much. On my good days I can go out and see a movie or get food, but most of my time is spent resting in bed. I’ve felt pretty isolated, but recently I met a new friend who also has Lyme. She and I text a lot and we’ve even watched TV together through Google Hangouts. It has been nice talking to someone who understands what I am going through. I try and stay positive and hope that the future will be better. Sometimes it’s hard though… Sometimes I do think having Lyme sucks and I wish I could me “normal.” Sometimes I wish I could hang out with friends, workout, go to school… But I realize that is not the path that life wanted to take me on. I have to accept that, learn to enjoy the little things. Like having an appetite or having a little bit more energy. I’ve learned to let go a lot. I’ve learned that family and health are the most important things. I continue to push through the hard days hoping one day this will all be in the past. But for now I will rest, take my medication, and continue on with this journey.

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