I live my life in what feels like an invisible state. People just see right through me. But not in the feeling like I can’t hide my emotions, that I’m like a sheet of glass and people literally just see right through me. I constantly feel ignored or that people don’t care, but even worse on top of that, when I think I’m being paid attention to I feel like people only see my disease. And they don’t even see it as what it is; a disease. They see it as if it’s a nuisance to them.
Emily got hurt again. Emily is a klutz. Emily is having surgery once again, nothing new.
Do people even know me without that as their first thought? Why do people who don’t even really know me roll their eyes when I mention anything wrong with me? I do not get it. I have never understood it. Why do we dwell on people and remember the negative things first about them? Why? I always try to remember the positives, some people make that really hard, but I still try. Nobody seems to try with me.
I’ve lived over half my life in pain and with injuries, I want to be seen past those. I want to be seen as just ‘Emily’ not ‘EDS.’ I want people to stop seeing my negative attributes first. I want people to stop laughing at me, or brushing me off.
Let me call what I’ve been going through basically my whole life what it really is; bullying and harassment. And it has broken me. I feel like people have broken me into so many pieces, I’m never gonna be whole. I have gone through so much in my life and I will continue to go through things in my life because of my EDS, and for once I would love for people to see it for what it is; a disease. Not a klutzy person, or anything else, it is a disease I will have forever.
For years I’ve felt like God hasn’t healed me yet because he wants me to use my disease to help others. I believe I will be healed in His time, but I want to help inspire those around me with the nightmare I live day in and day out and make them feel like it’s okay to not be okay. But it’s so hard when the people around me make me feel like I am dirt and that my issues aren’t serious.
At the point that I wrote this I had just found out I’m having wrist surgery after four years of sucking it up. And I didn’t want to have surgery because of what everybody will say to me about it. I don’t want to be harassed anymore, but that’s what’s going to happen. I’m going to be made fun of for another surgery that’s helping my health because people can only focus on the negative.
One day I told people I hadn’t seen in months that my wrist was more serious than we thought, they laughed because they remembered when and how I did it. That’s okay, because they knew the full story and for us now it is funny and stupid. What’s not okay is the other people who laughed just because I’m injured. What they don’t know, is like I said, I sucked it up for four years. People want to make fun of me because they think I just get hurt constantly, let me break it down.
My left shoulder first dislocated at thirteen, I dealt with dislocations till I was eighteen almost nineteen. We lost count how many times it dislocated before I finally said, I can’t deal with it, I need it fixed. I had surgery over five years later and not a single dislocation later. (KNOCK ON WOOD!) I dislocated my right shoulder even more severely than my left and was only able to deal with it for two years before I tore it. Surgery fixed that and I haven’t had much pain in eighteen months. I was thirteen when I was diagnosed with tendinitis in my knees, but they had been bothering me for years prior, I had sucked it up for ten years when my right decided it was ready to give out. Dislocations and constantly wear and tear will do that, I had apparently been living with two ligament tears in my knees. I punched a wall when I was fifteen four years ago, it was stupid, and now it’s funny but this pain hasn’t been. I’ve suffered for four years before I finally decided I couldn’t anymore. I can’t go to college or really work a job when my hand feels like it’s going to fall off, so I’ve done everything until we’ve finally reached the only option left; surgery.
All of my life I have sucked it up, and I’ve finally reached my breaking point with a lot of my body. I cannot help how severe these injuries were, all I could have done was not play sports or a punch a wall to prevent them, but that would have kept me from a life I loved. Now though, I wonder if people would see past the injuries if I hadn’t “done them to myself” by living like a normal kid. A normal life for anybody else will still give me injuries, I can’t help that and I can’t help what I go through.
But what I can do is put this out there; please stop treating me like a walking accident. See me for me, for Emily. Stop rolling your eyes when I say something hurts. Stop making jokes at my expense. Stop focusing on the negative about somebody. Because you never know when all that stuff you throw at somebody is going to break them. And for me I’ve been broken for awhile, so congrats your jokes really do hurt. But sticks and stones right? Those are all that hurt? Maybe think about your words and actions next time, because all I may do is cry, avoid leaving my house, and write a blog post but somebody else may do something a lot worse.
“A new command I give you: Love one another. As I have loved you, so you must love one another.” John 13:34 NIV