How I Push Forward When the Fears of What My Illness 'Could' Do Hit Me
I’ve been an “I could” kind of girl for as long as I can remember.
It started when I was younger. My dreams were big, as they should’ve been. I could be popular. I could be beautiful. I could grow up and be famous. I could be this, I could be that. I wore out the phrase like an old sweater. It’s always been familiar to me, and it flows off my tongue like the melody of a song.
Just like every child does, I grew up and my dreams became a little more realistic. My “I coulds” became more obtainable, and I hoped to achieve them. I dreamed that ultimately, someday, I could change the world. I could change people’s lives. I could make a difference.
But the days grew longer and my bones began to ache. At 17, I was worn out by noon and my fatigue overtook everything. I was in pain constantly. I was so sick.
The “I coulds” changed again.
I could have fibromyalgia. I could have arthritis. I could have an undefined connective tissue disease. I could have lupus.
And then, for the first time in my life, an “I could” became an “I do.”
On Tuesday, January 26, I was diagnosed with lupus.
Lupus. A disease where the body’s immune system attacks itself. This attack results in joint pain, a facial rash, memory trouble/loss, and exhaustion — along with many, many other complications.
And now, the “I coulds” sing a different tune than ever before.
I could lose my hair. I could lose my memory. I could have kidney problems. I could have heart complications. I could end up not being able to go to school. I could end up in the hospital. I could have trouble breathing. I could have to give up on my dreams.
I am constantly at a loss. No one has written an instruction manual on how to accept the unexpected.
I spent so much time crying and grieving about this diagnosis, because the biggest “I could” in my life involves the fact that I could die. Not everyone has to go about her everyday life with the constant fear that the dormant disease inside her will take a drastic turn. Not everyone has to live in fear of the silent disease that could call them home.
It hasn’t fully hit me that I am living now with a rare, autoimmune illness. It hasn’t fully hit me that I may have to kiss some of my dreams for my future goodbye. It hasn’t fully hit me that I am never going to be the same, and that my life is going to be different than I imagined it — that I will be living now with a “new normal.”
But what has hit me is that I absolutely need to be brave. I need to live every moment with a joyous and thankful heart. I need to praise my God for every moment where I feel good. I need to rejoice in the moments when I am not feeling any pain.
And when I do feel pain? I need to pray. I need to push. I need to persevere.
Because I am lucky, even in those moments that I feel as if I am unlucky. It could always be worse, and I am still so blessed to be where and who I am.
I’m writing this today because I want everyone to know it’s OK not to be OK. It’s OK to be weak and to not feel like you can push through any longer.
But it’s not OK to give in and give up.
I believe that in everything that you do, you need to do your best to prevail. You need to push yourself to succeed and to be the very best that you can, always. Every day of your life, you need to let yourself be afraid. You need to let yourself be scared of what could be. Do wild, adventurous things that scare you.
Just let yourself live, because truly, you never know when that privilege will be stripped from you.
Right now, I am so scared. I am so, so afraid. But that is not going to stop me from turning every “I could” into “I am” and “I did.”
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.