Do you know anyone with a rare illness? Chances are you do and may not even know it. According to Global Genes, 1 in 10 people have a rare illness. If you don’t know someone personally, then let me introduce myself. Hello, I’m Emily, and I have 2 rare illnesses, Mast Cell Disease and Ehlers-Danlos Syndrome Hypermobility Type.
Today, February 28, is World Rare Disease Day, so in honor of it, I wanted to give you a special Tuesday edition of Jesus in Every Moment. I want to show you the rare gifts you can experience when you live with a rare illness. The name “Jesus in Every Moment” actually came from my friends asking me how I managed to not just live, but seem genuinely happy in the middle of life threatening illness. It really is looking for A Jesus Moment, any moment, no matter how small, where I can see God’s goodness.
Mast Cell Disease is incurable and life threatening. Think of it as allergic to life. I’ve had 23 anaphylaxes, life threatening allergic reactions, and somewhere around number 15 I realized I needed to give a better answer to my friends. When they asked “how do you do it?” They needed more than “it’s Jesus.” Actually, I needed to break it down and figure it out for myself.
I also have Ehlers-Danlos Syndrome Hypermobility Type. Ehlers-Danlos syndrome is a genetic defect in the collagen. Collagen acts like glue to hold our bodies together. My particular subtype mostly affects my joints and skin. In a healthy person’s body the collagen acts like superglue. My joints are held together with a preschooler’s glue stick, minus the glitter. So, I frequently and easily sprain, partially dislocate, or fully dislocate joints.
At some point in our lives, we will all go through something difficult. When we do, it is important to acknowledge how hard it is, but it’s also important to look for the good in the middle of the pain. Psalm 27:13 is a verse I have clung to since I was a teenager, often reading with tears streaming down my face.
“I remain confident of this: I will see the goodness of the Lord in the land of the living.” (NIV)
So, where is the goodness of God in all of this? Sometimes, when we go through something beyond the realm of comprehension it feels like the “land of the dead” not the “land of the living.” How do we find life and goodness? I want to share with you the gifts and goodness I have found in a rare world. As you read, think about what gifts you have found when you’re going through something difficult. These are just 10 areas where I see the goodness of the Lord in the middle of rare illness.
I have gained so many friends because we share a common bond of a rare life. (How else do you explain a Yankee’s fan and a Red Sox’s fan becoming friends?) I have never met in person most of my friends who have a rare illness, but our friendship isn’t any less. Sometimes there are things that can only be understood by someone else going through the same thing. While our rare illnesses brought us together, our bond goes beyond that. I still wish none of us had these illnesses, but if we do, I’m glad we have each other. We know what it’s like to be left out, so we don’t want others to feel that way. They are a gift. When you go through something unusual, you need unusual people to help you.
- Sense of Humor
While it’s not always true, I’ve seen my friends with rare illnesses have some of the best senses of humor. Laughter in the middle of pain is a gift and unexpected. I look forward to the daily puns one friend posts on Facebook. Someone once marveled at me for posting a funny picture of myself on Instagram while I was being observed at my doctor’s office. I was waiting to see if an injection would cause anaphylaxis or not. Humor is one of my ways of getting through something; it never occurred to me that others don’t do the same thing. Some of the quickest wit I have seen comes from patients with rare illnesses. Balloons out of gloves are classic, but I’m talking about a good unintended practical joke. During my last anaphylaxis, I had a doctor and nurse at the ER who knew me well. My doctor said I could use the restroom, and after all the time I’ve spent there I knew how to unhook own monitors. There was just one problem; she forgot to tell my nurse. I realized just how much he cared and how fast he could run when he showed up in my room in a full sprint with a face full of compassion and concern. Since she never told him my monitors would be unhooked the alarm went off at the nurse’s station, and he thought I stopped breathing and my heart stopped beating. The concern quickly turned to relief and laughter when he saw me standing up walking across the room. When you know deep pain, you cherish deep joy.
Everyone is different, but people who know great pain are often the ones who have great compassion. Never hide your problems from a friend with a chronic or rare illness because chances are, she can sense something is wrong anyhow. (Do be tactful though. I mean I don’t really want to hear about your shoes being ruined from stepping in mud when I’m in the ER fighting for my life.) At the same time, we understand what it’s like to be hurting. When you know what it’s like to hurt deeply, you know how to care deeply.
We often see details others miss. Because so little is known about what we go through, we must pay attention to everything all the time. I’ve always been detail oriented, but now it’s even more so. I need to be able to quickly assess a situation. I need to see the big picture and the tiny details. I used to think it was an annoying trait in myself, until a friend thanked me for helping her because it was a skill I had and she didn’t. We made a great team. When your life depends on small details, you develop the ability to see what others might miss.
We often have to find different ways to do things. How do I fill the need for friendship when many days I can’t leave my house or have friends visit? My psychologist usually tells people to step away from social media. She told me to use it more. While it won’t replace face to face interaction, it’s different way to meet a need. Pillows are a rare and treasured commodity in hospitals. There is usually an abundance of blankets though, and two of them folded just right makes for an even more comfortable pillow for me. When you live with unusual problems, you develop creativity for unusual solutions.
- A Voice
Unusual problems are often hard to understand. When you have a rare illness, that means few people have heard of it, including doctors. My local hospital actually uses me to help teach residents, but I had to learn to speak up. Someone giving me the wrong medication could cost me my life. That has carried over to other areas. While I still don’t like speaking up, I’m learning it’s okay and healthy to tell a friend when I’m hurt. When it comes to the medical world, there are many wonderful doctors out there, but unfortunately others see someone with symptoms they don’t understand and write it off as a psychiatric disorder. It took me a long time to realize I could refuse treatment from someone who was causing me harm or even walk out of an appointment if needed. After so many sessions I can hear my psychologist’s voice in my head saying, “You are your own best advocate.” Just because something is difficult to talk about, doesn’t mean you have to stay silent.
- Love from Others
There’s a second half to that line from my psychologist. “Your mom is your next best advocate.” I’ve had to learn it’s okay to need people and to let them love me. Sometimes physically I can’t speak up for myself. Other times I’m mentally exhausted, and one more phone call for a prescription refill is too much to handle. Having someone who can help with that makes the tough days less difficult. I often hesitate to ask for prayer when I’m having a rough day. The thing about a chronic rare illness is, it never ends. So, it’s easy to feel like a bother when you need help, again. One friend said to me she hated that I felt like I couldn’t always ask for prayer. I’m learning I need to let others love me. Just because something is rare doesn’t mean you have to handle it alone.
- A Sense of What Matters
None of us know how long we have on this earth, but I’m even more aware of how fragile life is because I have a life-threatening illness. I’m much quicker to tell a friend I love her or how much she means to me because I realize there is so much pain in our lives. We need to know we matter. I’m also more intentional with my time. We all have 860,400 seconds in each day. “Live Forever” by Matthew West sums it up well. No, I don’t spend every moment worrying if it will be my last, but I do want to leave something that will outlive me. I know my time is even more limited than someone who is healthy. Much of my time is spend managing the symptoms of these illnesses. (I’ve stopped 6 times already while writing this blog. I had 3 moments of “brain fog” where I couldn’t figure out what to say, and three times I needed rescue medicines to stop an allergic reaction.) So, I have to be intentional with my time. I don’t say “yes” to every project or opportunity offered to me. I’ve taken writing or editing jobs that pay less than others because they meant more to me. I want to make a difference. When you know how fragile life is, you appreciate it more.
It takes strength to live a fragile life. People have often said to me how a rare illness makes you strong. I have to disagree a little. I have seen people crumble under the weight of the emotional pain; it can make you suicidal. I’ve been there. It can break you. It can also make you hard or jaded. I’ve seen others cope with the pain by putting up walls around their hearts. They think by being hard they’re strong. Really, they’re hurting and lonely. I can’t handle one second of this on my own. It’s God who gives me strength. “Tough” by Morgan Harper Nichols is a song I listen to daily. I want to be free from these illnesses every day. Who wouldn’t? What I have to remember is God is the only one who can give me the strength to keep going when I want to give up. Strength to live with something you can’t understand can only come from a God whose great love cannot be comprehended.
- Deeper Faith
This is the most important one. I want to be clear. God did not cause the illnesses I deal with. He is a God who gives good gifts, not pain.
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows” James 1:17 (NIV)
As long as we’re living somewhere between Eden and heaven, bad things will happen, including rare incurable illnesses, but God is always with us. Of course, I want to be healed, but I had to stop seeing God as a vending machine. I can’t pay enough or enter a code and expect my healing to drop to me like a candy bar. He is so much more than that. I’ve been forced to dig deep into His Word, and learn who God is. While it sounds odd, I’m often the most aware of His presence when I’m lying in the ER fighting through a life-threatening anaphylaxis. True healing has nothing to do with our physical bodies. It’s about the beautiful work God wants to do in our hearts.
What are you facing that makes no sense? What hurts are you carrying? You can be confident you will see God’s goodness if you look for it. In the meantime,
“Wait for the Lord; be strong and take heart and wait for the Lord.” Psalm 27:14 (NIV)
Thank you for letting me share this with you. You are a gift to me. Is there something you can relate to? Have you learned something similar during a difficult time, or is there something you want to add? Please leave a comment on the blog. You matter to me!