Physically, I’ve been struggling my whole life.
It started in elementary school with the seizures. Eventually, that disorder did heal, but left a giant scar. It wasn’t a physical scar on my body, but a mental scar, filled with the pain of going to so many doctors appointments and taking hundreds of pills and being hospitalized, and the CAT scans, and the MRIs, and the secret tears I know my parents spilled, accompanied with migraines, which I still get today. I thought that was it for me with my health issues. Clearly it wasn’t.
I’ve taken immense solace in the fact that my physical health diseases have always healed.
But, this time, it didn’t.
I can plaster on my fake smile and go about my day like nothing’s wrong.
Last year, I was diagnosed with Crohn’s disease, an autoimmune disease that has no cure. My chronic disease is by far not as severe as others. I take Remicade, which takes away most of the pain. Still, some days are worse. Some days, I spend time sobbing my heart out because I don’t know how long I can do this anymore.
I was barely 16 when I was diagnosed, and I just can’t imagine what more I’ll have to go through. I hate pain.
Even more so, I hate pity.
Just because I have a chronic disease doesn’t mean I need to be taken care of differently. I don’t need anyone to go the extra mile for me to feel happy. I’ve learned that yes, my chronic disease is a hindrance in my life, but it won’t stop me from living my life the way I want to. I’m still traveling, I’m still going to school, and I’m still writing. I refuse to conform to my autoimmune disease; it will not control my life.
My physical illness is invisible, just like my mental health issues. No one can see what I’m going through. Most of the time, I’m grateful for that. I can plaster on my fake smile and go about my day like nothing’s wrong.
I wish people would stop judging me, hating me, leaving me out.
Other times, I wish I could shout it to the world. There’s a constant struggle in my mind of whether or not people knowing would make a difference– whether or not they even need to know. I wish people would stop judging me, hating me, leaving me out. It seems like such a horrible thing to say, but I wish they would pay attention to me for once, and see that something is wrong.
I wish they could just magically guess that I’m sick and treat me right. I wish they would care enough to see that I’m breaking down on the inside; I’m falling apart. I wish they would notice – or even just notice me. Despite this, I try to pretend like the hate doesn’t phase me. It doesn’t matter if they like me or not. I’ve told myself that repeatedly for the past few years that I can barely sleep at night, so I’m up until 2a.m. wondering what the hell I did wrong.
And it’s hard to admit it, but I do care what people think, and I guess that’s the first step in recovery. I don’t want to be known for my disease, but I want to at least be known.
I feel numb now, going to the doctor, getting a needle stuck into my vein for two hours, getting it wrapped in a bright, sharp blue bandage, and sleeping on the car ride home because my eyes won’t stay open anymore. It doesn’t phase me that what I’m going through is not normal. Instead, I end up feeling empty inside most of the time because I’m scared.
I hate admitting it, but I’m scared of death, of pain. I’m scared of needles. I’m so damn terrified that I just go numb. Then, I end up faking a smile and pretending like I don’t care that the person next to me is oblivious to my condition and is unknowingly hurting me, And all I can think of, all I can envision is that pain that I have to go through again. I can’t see it or feel it or touch it.
And there are millions of people out there who can’t see, feel, or touch their disease. I don’t want this to be a story of hope that everything will be ok one day. I’m still suffering with millions of people. I want this story to say that it’s okay to be sick. It’s ok to feel what you’re feeling. Sometimes, I feel things that scare the hell out of me, but I’m okay with that.
I will not conform to my auto-immune disease.
Even through COVID-19, it’s okay to lay in bed for a whole day doing nothing. It’s okay to feel the pain and understand what you’re going through. It’s okay to be jealous and it’s okay to feel hurt when someone treats you wrong without knowing what you’re going through.
I want people to know that we are all going through this together, and there is no disease that can stop us from moving forward and living our lives. We will not conform to COVID-19, and I will not conform to my auto-immune disease. And even if no one sees that I’m suffering, I think I’m okay with that, and I won’t let it stop me from living the way I want to.