Rare diseases can make the patient feel lonely or isolated. It can happen very easily and very suddenly. One day you're just like everyone else and the next you're struggling to even get out of bed. Your whole life changes right in front of your eyes, but there's nothing you can do to change it. You start feeling isolated or even isolating yourself. I mean, it's lonesome to be the only person, in your group of friends or in your family, that is experiencing gut-wrenching pain and being so sick all the time. For the first few years of being extremely ill, I didn't know anyone else going through the same thing I was. At the time, I spent way too much energy trying to keep up with all my friends and act like I wasn't sick. However, the truth was, I came home every night where I would break down and I would beat myself up. "Why can't I just be normal?" No one else understood what was happening, nor did I. After a while, I lost the capability of acting like I was normal, whatever that may be anyway. It became very obvious that I wasn't like everyone else. I couldn't play sports anymore, I barely attended school, and all my free time was spent at the hospital. Life for everyone else around me carried on, even though it felt like mine was frozen. As each day passed, my spirits dropped lower, my attitude changed, and the social isolation kicked in. No one understood what I was dealing with 24 hours a day, seven days a week. No one.
Then one day, I was browsing through a social media app called Instagram. I came across an old friend, Ellen, who I met through volleyball camp one year, who had recently just posted a picture. When I looked at the picture, I immediately recognized where she was... the hospital! I wished her well and hoped it was a short stay, when after several comments back and forth, she released to me the fact that she had been spending most of her time inside those four walls. I jumped for joy! Not at the fact that she was sick enough to be in the hospital (of course) but because for the very first time, I met someone else who understood what it was like to be sick, someone else who understood the struggles in my life. We immediately exchanged numbers and not too long following those Instagram comments, we were hanging out and our friendship was the first sense of normalcy I had felt in a long time. Our friendship was exactly what I needed. It didn't matter to her that when we did hang out, it was most often when one of us was admitted to the hospital. We were there for each other through surgeries, admissions, ER trips, appointments, testing, you name it. She never questioned why I wasn't able to do "normal" things, it was our normal, and that was okay as long as we had each other. Despite the periods of time we may go without hanging out or not talking as much, at the end of the day, I know I can still go to her if I need someone to understand the way I feel. That it's okay to cry when I'm tired of being sick, because she knows the feeling too.
Then one day, I was browsing through a social media app called Instagram. I came across an old friend, Ellen, who I met through volleyball camp one year, who had recently just posted a picture. When I looked at the picture, I immediately recognized where she was... the hospital! I wished her well and hoped it was a short stay, when after several comments back and forth, she released to me the fact that she had been spending most of her time inside those four walls. I jumped for joy! Not at the fact that she was sick enough to be in the hospital (of course) but because for the very first time, I met someone else who understood what it was like to be sick, someone else who understood the struggles in my life. We immediately exchanged numbers and not too long following those Instagram comments, we were hanging out and our friendship was the first sense of normalcy I had felt in a long time. Our friendship was exactly what I needed. It didn't matter to her that when we did hang out, it was most often when one of us was admitted to the hospital. We were there for each other through surgeries, admissions, ER trips, appointments, testing, you name it. She never questioned why I wasn't able to do "normal" things, it was our normal, and that was okay as long as we had each other. Despite the periods of time we may go without hanging out or not talking as much, at the end of the day, I know I can still go to her if I need someone to understand the way I feel. That it's okay to cry when I'm tired of being sick, because she knows the feeling too.
A while after Ellen and I's friendship was at full bloom, she introduced me to the "spoonie world." I was shocked at how many other children, teens, and young adults were fighting the wars of chronic illnesses and rare diseases. Though these people may not be battling the same exact diseases I was, they still understood what being sick 24/7 felt like. They understood what it was like to feel like a pincushion, a guinea pig, and different from everyone around them. I started following other spoonies and their journeys of rare/chronic diseases and realized how much we all had in common. Whether they knew it or not, these people became my best friends, the people I talked about all the time, regardless of having never met them in person.
One day I ran across another spoonie named Charlotte. She was the owner of something called The Green Feathers Project. Her project delivered handmade bracelets, free of cost, to other people fighting illnesses and those who support them. She, herself, fought chronic diseases and wanted her project to represent as a symbol of hope. After sending a message letting her know I was interested in a bracelet, we talked on a more personal level, and not just about the GFP. Again, I was amazed at how much in common we had, though out of the several illnesses we both have, we only had one in common. Before I knew it, we were texting everyday, talking on the phone, Skyping, etc... This girl was another one of my best friends and I have only ever seen her on a computer screen. Hundreds of miles away in a different state, she was still there for me through the roughest times of my life. On June 28th 2014, we met face-to-face for the very first time! Since then we have made the journey to see each other three more times (and MANY more to come). She is one phone call away when I need someone to talk me through all the reasons why sometimes this life just isn't fair. Even though we're so far away, we couldn't feel closer.
Being sick has affected so many aspects of my life. It may have taken away my past friendships, leaving me devastated when it did. Despite having it destroy past friendships, it opened the door to my new friendships I have now and for that one and only reason alone, I wouldn't trade in being sick for the world. These girls hold such a special place in my heart, being an unique part of my journey, and I know I have positively influenced them in this path of their life as well. Instagram, Facebook, and Twitter have changed my life in such a way I'll never be able to truly comprehend. I have met some of the most wonderful people in the entire world through social media. I have met other patients fighting the same and/or different rare diseases. I have joined in online support groups for some of the rare diseases I have, positively impacting me and reminding me everyday that I am never truly alone during my fight.