Why I'm Afraid to Be Vulnerable With People Because of My Illnesses
I can’t remember what “normal” feels like. I can’t remember what it feels like to not be in pain, what it feels like to not be severely fatigued all hours of every day. I don’t remember what it feels like to eat a meal without taking eight or nine different medications, what it feels like to be able to run, or do anything I please.
All I know is running out of breath walking down the hallway or using a wheelchair on bad days when my body just can’t support itself. All I know is constant pain in, varying degrees of pain in different parts of my body, with no way of predicting what might hurt the next day. All I know is cramping fingers after five minutes of using my pencil, while doing homework, or being forced to request due date extensions because I got sick. All I know are my diseases.
But yet, no one sees this part of me. While all I know is pain, all people see is a “healthy” 17 year old girl. They can’t see the pain, they can’t see the constant exhaustion in my muscles. In the minds of a bystander there’s no reason why a teenage girl should be in a wheelchair without a leg cast.
On bad days I put on a face. I can smile. I can laugh. I can appear “normal.” In fact, I’m quite good at that. Only those very close to me can tell the difference between my act and the real deal.
Why do I put on an act? What is my reasoning behind it? I’m scared to open up.
I want to, but I’m scared. I’m scared of how people might react. I’ve been rejected by three different doctors and many people, who claim it’s nothing and simply all in my head… so why should other people react any different? I can’t handle one more person not believing in me. And not only am I scared to death of reaction, but I don’t want to deal with the awkwardness and the embarrassment of explaining my illnesses and the affects they have. I hate the awkward silences or the blunt explanation of my conditions. And I don’t want the guilt of feeling like a burden to my friends once they know of my limitations. I’m more prone to simply bottle it up and push through my pain, no matter how excruciating, simply because I’m scared, embarrassed, and constantly feel like a burden.
I desperately wish that I could be open about it. I wish that I could just be myself with people I love and be vulnerable with them. I wish that I could be comfortable around others, even if I’m in pain, and not have to worry about covering up my fatigue and pain for their benefit. I wish that I wasn’t scared to be real with people. And maybe it’s partly my fault. Maybe the people around me are willing and waiting to love me and be there for me and allow me to be myself, but I’m too scared to give them a chance. Maybe there are faults on both sides.
But, when I do let people in and allow myself to be open and vulnerable, I’m worried I’ll be perceived as nothing but a sob story. Yes, I want them to understand that my life sucks. I want them to understand that I’m in constant pain and that most of the time I have a really hard time just getting through each day. But, I also want them to understand that I’m still me.
Despite all of the pain, hardships and grief that I have to go through, there are times when I’m still the happy go lucky girl I’ve always been. I’m still passionate about sugar (even tho I can’t have it anymore), and I still worry about what I’m going to wear the next day. I still love to eat pizza, I still love to read books and binge my favorite TV shows. I still like playing or cuddling with my puppy. I still enjoy singing and playing my guitar and ukulele. I’m still in love with my piano. I’m still the dorky girl I’ve always been, except now I’m chronically sick.
When you find out about my illnesses, please understand that I do have very difficult days when I can’t even get out of bed or do my homework. Sometimes I’m even in pain, crying all day. But, also understand that even though I have changed, I’m still a girl who has hopes and dreams like everyone else.
I’m still me. I’m just sick me.
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