I have an impeccable talent. To be tough as nails on the outside, no matter how I feel on the inside. I inherited it from my mom. She can always keep it together, and be so poised under any amount of pressure. I’ve always admired her strength, because its what gives me strength. Most parents would have crumbled by now seeing their daughter in half the pain I’ve gone through. But my mom has managed to be my rock, and she gave me the gusto to tackle any challenge I was handed. I have an amour cast around me that no one can see, but only I can feel. It’s my shield from the pains of the world, and it’s what gets me through my days.
Sometimes though, the world just seems to fall around you. Piece by piece things start to unravel, and this strength you harbor seems like a fleeting feeling. There are two things I believe in: 1. When it rains, it pours 2. After the storm, there is always a rainbow. The rainbow doesn’t always come as soon as you may want, but it always shows up. Some days can be unusually hard, whether its physical struggles or emotional struggles. On those days I know the best thing I could do would be to let my walls down and talk to the people who love me for support. This however is also the toughest thing to accomplish, and I’m sure many people can relate.
I struggle with desperately wanting people to understand what I’m going through, but never wanting anyone to pity me. Anything but that. I hated when I felt like a spectacle to people around me, looking at that strange girl they feel sorry for because life handed her a tough deck of cards. The truth is, I’m strong enough to handle the draw life might have gave me because it has made me the person I am today. I’ve gotten so used to handling the tough moments internally that when it comes time to discussing it openly I waver on this line between wanting understanding and trying to avoid pity. Sometimes I want to dial down the truth, but then I realize that if I don’t emphasize the hell of what Lyme disease does to a person, then no one would grasp the seriousness. If you are healthy you wouldn’t understand why I just hibernated for the last 2 days, or why I cancelled the last 4 dinners, or why I can’t physically move from the couch. Until you have walked a mile in my shoes, and at a young age had your health taken from you, then I would say don’t judge. However, since the world & people are incredibly judgmental I find myself having to explain the agony I experience daily, so someone, anyone, would get it. I just want people to want to understand. I yearn for the people I love to take a genuine interest and learn not to feel sorrow for me, but simply listen and understand.
I know I’m not perfect. I know that finding this balance when I communicate to others is always going to be hard. To be honest, even having to verbalize what Lyme does to me physically is tough. It’s hard to get the words out. I think when you say it out loud it puts you in a vulnerable place. Suddenly it’s very real, and you are serving it on a silver platter to someone who may or may not even acknowledge it. It doesn’t do anything positive for me personally to talk about my struggles. I do it so the people I care about can understand, and I do it for advocacy for everyone who doesn’t feel like they have a voice. This disease is tricky & there is a lot to it. When I got diagnosed myself I did not have the first clue how to wrap my mind around what it would entail. But through the years I’ve learned first hand the raw gritty truth. So I try… I try to somehow explain it & make myself an open book. I try to hold back the tears and the heartbreak when I have to explain to someone for the 100th time that I don’t know when I will be better, because I don’t have an answer for that. I try to put on a brave face when I have to re-live my hard moments in painstaking detail to bring an understanding of what it’s like to live with this misunderstood disease. I try, because it’s all that I can do. It’s all that any of us can do.
I realize that not everyone will care. It’s inevitable that some people won’t respond no matter how hard you try. Sometimes people are so wrapped up in the good of their life that it’s just not a priority to immerse themselves in the struggles of yours. And that’s okay. Because I know that if I simply try for honesty then I’m doing my part the best I can. Those who listen and become involved are the people I can count on for a lifetime to weather any storm. Those are the people who help me put my walls down and realize that showing my truth can be a good thing. And for that simple fact right there it all becomes worth it.