Today, I get to introduce you to someone who is very special to me. We “met” in 2016 and became fast friends. I say “met” because I actually have never “met” Emily in person. Her blog will explain a little more about why.
In 2016, my sister tagged me in a devotional online. I read it and was so touched by it, I looked up the author — it was Emily. Soon after that, she asked me to join the devotional group she was the project coordinator for and now completely oversees.
Emily is a warrior. She is fiercely kind. Extremely thoughtful and an amazing friend. She is always full of encouragement and she is so transparent even in situations that would make the strongest human being want to crumble. I am deeply grateful God placed her in my life and I am beyond thrilled to have her share with us what “National Rare Disease Day” means for her.
Many of our fears are based on the small chance of something happening. I have a fear of electric eels. I don’t live in South America, and I don’t plan on sneaking behind the scenes of a zoo or aquarium. So, I’m not likely to encounter one anytime soon. I’m afraid, but it’s not a fear with much basis in reality.
What do you do when fears are based in reality because of things you can’t control?
What if you have a fear of the hospital or doctors, not because unfamiliar medical procedures, but because they have a history of not knowing how to treat you?
What if you’re afraid to lift something because you might dislocate you’re wrist or shoulder?
What if you’re afraid to wash your hair because you might be allergic to the shampoo? You used it yesterday, and had no reaction, but a reaction with no warning happened with the brand before that, the brand before that one, and the one before that.
Those are just some the fears I live with every day. I have two rare illnesses. For many rare disease patients, the fears are similar. Fear of the unknown can be paralyzing.
I have Ehlers-Danlos syndrome. Collagen and connective tissue such as tendons and ligaments are designed to hold our bodies together. In a healthy person, those are like superglue. Mine are like a preschooler’s glue stick, minus the glitter. For my subtype, hyper mobility, this means doing everyday tasks, like reaching for the remote control, leads to sprains as well as partial and full joint dislocations. It’s painful. It can also lead to complications with wounds not healing well and a greater risk for a life threatening aortic tear.
I also have a Mast Cell Disorder. Mast cells are white blood cells and are part of the immune system. They’re supposed to fight infections. In an otherwise healthy person, when they malfunction they cause allergic reactions to things like dust, pollen, bee stings, or peanuts. For the most part, if someone avoids a specific trigger, their health isn’t in serious danger.
My mast cells are constantly hyperactive and malfunctioning. They see everyday, benign things as an enemy, things like fragrances, food, temperature, sunlight, strong emotions (both good or bad), too little sleep, certain sounds, and so many others. The list is endless. Often, my mast cells react for no identifiable reason. When they do, they attack my body, mistaking it for something foreign and bad. A mast cell disorder is basically allergic to life. In just over a year, I’ve had 66 anaphylaxes. Those are life threatening allergic reaction emergencies that require an epinephrine auto-injector and a trip to the Emergency Room, where, depending on if they follow my unique protocol for a mast cell disorder or not, I could get worse instead of better.
So, eels aren’t the only thing I fear. I fear living in a world, living in a body, that’s threatens my life, every second of every day.
We all have some fears rooted in reality, fears of things more likely to happen than having to hold an electric eel. Many times, they’re because of situations we have little or no control over.
We often focus on eliminating what we’re afraid of. If we can’t eliminate it, we try to control it to some degree. If we can’t control a eliminate or situation that causes us terror, how do we handle it? How do we live without it controlling us by the fear it brings?
There’s no single answer, but for me there are two helpful things. First, is remembering God knew this would happen. We live in a broken world. God knew all the evil and terrible things that would happen to people, both those who follow after Him and those who don’t. When I don’t think I can handle what the next minute could bring, it’s comforting to know He is ready to handle it because He knows what will happen. John 16, Jesus tells His disciples hard things will happen to them. He told them so they wouldn’t be afraid.
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33 NIV
The second thing is not only did he tell His disciples they would face things that would be hard, He also wanted them to know He is more powerful than anything they would face.
Those promises still stand true for us today. I realize anaphylaxis because of a mast cell disorder may take my life. I also have to realize God is the one who is in charge of my life. He knows what I’ve faced in the past and what I will face in the future. He knows the same for you too.
Overcoming the world doesn’t mean being immune to what happens here. It means God is stronger, and He isn’t controlled by it.
I may be living with circumstances beyond my control and you may be as well. God isn’t swayed by what we fear or even our fear itself. We’re not less in His eyes because we’re afraid. He sees us. He knows us. He knows our pasts and how it affects our emotions about our futures. He promises His peace. His peace isn’t always the absence of fear. It’s a quiet assurance in the middle of fear that He is in control. We’re not in control, and that’s a good thing.
— Emily Furda