themighty logo

What I Fear Most When It Comes to My Lupus


It’s been almost two months since my lupus diagnosis.

That means I’ve had two months to process everything and to let it sink in. That is two months to finally let go of this grim diagnosis and to allow myself the chance to live, despite this setback. It’s been two months and I’ve had enough time to grieve and it’s time to move on.

But for some reason, I just couldn’t.

It was a lingering thought in the back of my mind. A small voice that whispered “lupus” over and over. I tried so desperately for weeks to try to move past it by Googling information about it — and ended up finding stuff that upset me more. Things about lupus like: “one of the most mysterious, devastating and cruelest diseases,” “contributing to cancer,” or my personal favorite, “the leading cause of stroke-related death in women.”

And for a while, I thought I wasn’t able to move on because I was so afraid of dying. I’d spent so much time afraid that this would be my demise that I had myself convinced I was selfishly holding onto this diagnosis because I was afraid of dying and not being able to fully live my life. I’d become obsessed with the fact that I potentially could lose my chance of being someone “normal.”

So in this constant state of self-pitying, I see a counselor to help with my grief.

And as I was waiting in the waiting room before my most recent appointment, a boy talked to me.

He was about my age; however, he was much younger than he appeared to me. He saw my glasses and informed me that he needed some. We had a brief conversation while his mother tried to hurry him along. She seemed concerned that he was bothering me. She relaxed, however, when she saw that the conversation was mutual. He told me his name and asked for mine. He asked me never to forget him.

His mother smiled at me as he ended the conversation — a sign of appreciation from someone who has probably seen reactions not-quite-so-welcoming of her son’s open nature. As they left, my spirit was so lifted. I was so incredibly happy.

So when I saw my counselor, we walked through things that made me happy.

I told her about the brief encounter with the boy in the waiting room.

We talked about a little boy with a processing disorder who came into my work asking for a T-shirt to be made with his favorite cartoon character on it. A little boy who I was so glad to help — who gladly talked me through the different colors for the shirt and gave me a lesson on how to spell his name. Someone who was glad to write out all the paperwork for me because he was so proud he could.

We talked about the Instagram accounts of children with special needs who I follow and how they brighten my day with their personalities and smiling faces. The little girls with big personalities and curled eyelashes who sing while standing on tables, those little faces that brighten my days simply with their demeanor.

We talked at length about how excited I was to work with children with special needs one day. We talked about how I was incredibly thrilled to be given the chance to spend my life helping theirs. That’s, however, when I broke down. I expressed that I had a fear of dying before I could fulfill this dream.

And now I realize it wasn’t so much merely a fear of dying, but instead a fear of dying before I could help others.

I recalled I’d become obsessed with the idea of service projects. I’d become obsessed with finding ways to help others and to involve myself. I’d researched service groups at the university I’m attending. I’ve been trying to figure out different ways to help people, even in the smallest of ways. I want so badly to make some kind of impact, so much so that very recently, I’d become interested in the concept of creating crocheted stuffed animals to donate to children’s hospitals or fire stations. Small, small things.

Because now I realize I’m afraid of never making the impact I’m convinced I’m meant to.

I’ve set my heart on working with kids with special needs, people who had traumatic brain injuries, and survivors of abusive situations. I want to help others achieve the lives they are meant to, so badly. And with this lupus, I’m afraid that somehow it’s going to stop me.

I don’t want fame. I don’t want to make tons of money. I want to see a child survivor of abuse blossom out of their shell with a new family. I want to see a brain injury patient smile again or hold a conversation because of months of practice. I want the tears and hours of moving through obstacles to achieve a goal that is monumental for someone. I want that insurmountable joy when something goes right.

I want to go to graduate school to work myself tirelessly to obtain a doctorate to be able to work with those who may need me most. I want the debt. I want the hours of studying and the tests that seem impassable.

I want to be able to say that I reached my own goal of helping others get to theirs, but right now, I’m scared lupus will be my own obstacle to get over.

The only thing is, when I think about that boy in the waiting room, or I read about children who’ve been given a second chance at life by a doctor who believed in them… I know I need to be that kind of advocate. I know things are going to be tough, but something within me is begging me to persevere through it.

There is something within me that is begging me to know that I’m a future advocate for children. One day, I’m going to be the fire that lights a path for a mother who has felt helpless. I hope to be a vessel for children’s success through their obstacles.

Lupus may be my anchor, but my sails are set with the wind, and I’m ready to cut that anchor loose.

Love, passion and determination will get me where I’m going. There is no time for failure in the clock of my life.

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.