When people ask me how I am I often lie. I think that all chronically ill patients can relate. We always say “I’m okay” or “I’m fine.” We aren’t, but that’s what people want to hear. When people ask how you are, often it’s because they’re trying to be polite. Usually they don’t want to hear your long story about your symptoms and medical history. Whenever I’m out being social I want to act as normal as possible. I want everyone to treat me like they would anyone else. I don’t want to be negative and all about my disease. It’s hard though, cause my whole life revolves around my illness. I don’t know what small talk is anymore or what it’s like to be a “normal” teenager. Often I feel like an outcast. I feel different and uncertain on how I should act around others. I don’t know what my friends go through on a day-to-day basis. All I know is being sick. I don’t remember what it was like being healthy. So when someone tries to talk to me, often I don’t know what to talk about. If I mention my disease the conversation dies and it becomes super awkward.
Tomorrow is prom… I’m going to try to go hang out with a group of people. Some of them I know, some I don’t. They are going to get ready while I hang out. Then we are going out to dinner and taking photos. I wonder how it’s going to go. I have been really sick lately, so I will definitely need my cane, maybe even my wheelchair. It depends on if I go to all of it. I know that I can’t go to the actual dance, because of my neurological symptoms. My mom said that the restaurant will be crowded and loud too. That is not good for me, cause I’m very sensitive to light and sound. For example, when someone is talking at a normal volume, to me it sounds like yelling. Everyone will be nice, but sometimes it can be pretty uncomfortable for me to be social. I wish that I could be social without it being difficult for me. I wish that I could do everything I wanted. Unfortunately, that’s not how it is. It’s okay though. Everything will fall into place like its supposed to eventually, including my social life. For now, I have my family, my Lyme friends, and a few other friends supporting me. In the future, I can make new healthy friends. All I need is to be myself. That’s always been one of my values. If people don’t know how to act around me that’s their problem. I should feel comfortable being me. I shouldn’t feel embarrassed or ashamed about being ill. I don’t need to worry about what other people are going to think. I need to live my life to the fullest.
I used to be really bad with technology. I know many people probably don’t believe that, because teenagers are supposed to be really good at it. I however, hardly knew how to use my email or the internet. Now that I have been really ill, I have learned to used technology pretty well. I am definitely not an expert, but I’ve come a far ways.
I used to think that media was bad. I still think that it can be bad in certain situations or for certain people. For me though it has helped me so much. Basically my whole life is online and through the internet. Most of my friends are on Facebook, Instagram and other social media sites. I also text and Skype my friends. If there was no internet or these social media sites, I would feel very alone and isolated. The way that I see what is going on in the world and to people around me is also through these sites. I am very lucky and thankful to be able to use technology in this way. I think that it is amazing that I can have a friendship with someone across the country, and even across the world. It’s an interesting way of living. I don’t go out that often, so this has become my world. Before I had face-to-face conversations with people; now I mostly text, call, or Skype. There is a bad side to social media though. It’s hard for me to see my friends go on with their lives. It’s hard to see people out in the real world living. For me, I get more good things out of it than bad. I still wish to be able to have a social life, but this is at least something. I feel grateful that I get to talk to other teens going through the same thing I am. This is how I stay connected to life.
I just recently got involved with all of the Lyme disease sites. I remember before I felt very depressed and isolated. When I met my first friend online, life instantly got better. I remember smiling for the first time in months. I was so exited. Now I talk to her everyday and we even watch TV together through Google Hangouts! It’s cool, because I have so much in common with her. I feel like with all my Lyme friends (not just her) we have an instant connection. We all know what it’s like to be chronically ill. We’re strangers, yet the first things we ask are, “how are you?” and “what treatments are you doing?” You know that you are going to be supported by this person.
I think that there is a time and place for technology. For chronically ill patients it can be very helpful in keeping us from feeling alone.
Whenever I go back to my old school and see all the kids laughing and hanging out, I wonder what it would be like to be one of them. When I go see my friends perform, I wonder what it would be like to be on stage with them. I guess I will never know what it’s like to be a “normal” kid in high school. That’s okay though. I get an experience most people don’t get. Yes it can be lonely sometimes, but I have also met people I wouldn’t have. I have met my physical therapist who is now one of my friends. I have met my Lyme friends. I have met doctors and nurses; some good, some bad. I have gotten to see how people react to chronic illness and disabilities. I have seen how awkward and ignorant people can be with these two things. I have seen that as humans we don’t like to see each other suffer, so often we don’t know how to respond to illness.
I have learned about myself. I have learned how strong I am. That even if I think I am at my limit, I can continue on. I have learned who in my life matters to me, who cares about me, who knows how to deal with my chronic illness. I have learned how to let go and be okay with asking for help. I have seen fellow Lyme warriors who have gone through so much, yet they’re not giving up. I have learned how important love, compassion, patience, empathy, and kindness are. These things can make all the difference when going through hard times. I accept my illness and I’m okay with where I am. Yes I want to get better, but I know that everyone has struggles and this is one of mine. It’s okay to need help. It’s okay to be vulnerable. I used to think that I always had to be strong, and pretend that everything was okay. Now I know that it is okay to cry and be upset. But after you breakdown you have to pick yourself back up and keep going. I think that a lot of people think that being strong means that you can never show weakness. To me being strong is when you can be vulnerable and then keep living with hope. I think that it’s brave when people show emotions that others consider weak. I recently have been crying more in front of my family. I realized it’s good to be able to breakdown in front of people who care about you. It’s important to trust that they will be there for you and comfort you. I’ve also started being more honest with people about what is going on with me. I used to think that I shouldn’t share things about my disease, because it makes people uncomfortable. Now I understand that if I’m not honest, there is no way for people to know how I am. I want to educate people on Lyme disease and the only way to do that is to talk about it.