Disability & Rare Disease, Tough Times

Not Even Rare Disease

On World Rare Disease Day four years ago, I posted a small sampling of life lessons I’ve learned from living with a rare disorder. I’d just wrapped up my first year of life with a diagnosis (following twenty-plus years without one).

Since then, I’ve continued to learn – because rare disease is a constant teacher. And the more I learn, the more I realize that life post-diagnosis has a lot to teach.

Even though the disease itself remains the same, having a diagnosis alters your perspective. It brings with it its own unique challenges and opportunities – which apparently continue to bear fruit with time.

So, in honor of this Rare Disease Day five years into my diagnosis journey, I’m digging into six (more) lessons from this unique chapter of my life:

Names Have Healing Power

A name defines a subject in a short, convenient package. It’s a “handle” that helps us grasp everything we know about someone or something.

In a moment of uncertainty, having such a handle can be comforting. The names of our loved ones connect us to safety and community. The names of our adversities give us a sense of leverage, a way to quickly assert control over them. And even when actual control is impossible – as is often the case with rare disease and other difficult life circumstances – naming a problem can at least help you feel more prepared.

In fact, naming problems, feelings, and fears is often the first step towards addressing them. Overcoming issues or connecting with others all require us to name the thing that threatens us – and/or brings us together.

My disorder happens to be one of the few rare diseases with available treatment. Not a cure, but a way to help stabilize or slow progression.

I wouldn’t know this if, at age 22, I hadn’t finally discovered my disorder’s name. Simply knowing my symptoms wasn’t enough – I’ve had most of them since I was a young child. No; in order to claim the best possibility of healing, I needed the name behind them.

Now, because of my diagnosis, I have the opportunity for a better quality of life.

What’s more, I get to be part of a community I never knew existed. Before I was diagnosed, I was just “me”, the only me. Now that I know the name I share with others, I’ve been able to connect with dozens of fellow warriors. Our families get to share journeys, solve problems together, and support each other. And we get to work together through a dedicated foundation to better understand the disorder, improve treatment, and develop a true cure.

None of this would be possible if scientists hadn’t named the disorder to begin with, and if families given that name hadn’t gone looking for each other and connected through that name.

Names Have Killing Power

But names have a flip side: Even as we use them to help us understand something or someone, we may try to cram it/them into the name. We can turn a handle into a chain, a word into a unit of measure, a symbol into an identity.

While sharing a diagnosis can give you a sense of belonging (“Here, at last, is someone like me!”) and can help you solve shared problems, it can also tempt you to compare yourself to others. Because, at the end of the day, even people with the same disorder are not clones. They each have a unique story and presentation. There are similar struggles, symptoms, and experiences that only you share. But there are also inevitably differences that at times leave you feeling disillusioned with this whole “rare community” thing.

On another level, you might be tempted to put yourself in a box. To think your journey will unfold like someone else’s, or like the “average case”. To think you can only do so much, or will do as much, as them.

Or you might be tempted to do a little bit of both.

Names can be used for building understanding and connections. Or they can be used to pit people against expectations of themselves and others. This is true of any label – not just medical ones.

It can be hard to balance the tension. I think the key is to remember: Names are only names. Let them be just that. A title on a notebook to which you are always, infinitely adding more and more things you learn on a given subject. A notebook that’s always open.

And keep separate notebooks for individuals and the groups to which they belong. You can always cross-reference as needed.

Medical Advancements Are a Blessing and Privilege

Because diagnoses and other features of medical science are meant to be tools. They can be used rashly or unethically…or they can be used in thoughtful, ethical, God-honoring ways. We shouldn’t necessarily shun them – and we definitely shouldn’t take them for granted.

Many if not most rare diseases lack any treatment at all. Many are barely understood by scientists to begin with. Almost none have a cure. And even when there is some kind of help known to science and produced by tech companies, people need sufficient resources to access it. And even before they can look into treatment, they need to be correctly diagnosed, which by itself takes time, money, medical skill, commitment, and test availability.

Six years ago, I had no diagnosis. I’d lived so long with my symptoms that my family and I had almost stopped looking for one. It took a health crisis, a motivated neurologist with the right connections, and a whole-exome genetic sequencing test to get one.

And the crazy part? If we had gone down that same path just a few years sooner, we still would have missed a diagnosis, because the genetic cause of my disorder wasn’t identified by science until 2012.

Even when it comes to more common medical conditions, people’s access to quality care depends on many factors, such as location, socioeconomics, and family circumstances. And we all live in a more technologically advanced time than any of our ancestors. In many ways, the people of Jesus’s time could literally only hope for miracles.

To be clear, science and technology shouldn’t take the kind of focus and devotion only God deserves. And we shouldn’t prioritize physical health over spiritual well-being or ethics.

But they are still gifts for which we should thank the Giver. They can be opportunities and resources for honoring God and serving people.

Only Jesus Offers Real Life

Yet for all their benefits, medical advancements have their limitations. The process of understanding the human body and ways to promote its health is ongoing – there will always be things we don’t know or can’t do.

And for all we do know and can do, science only solves scientific problems. It can ease suffering but can’t tell us how to live with it. It can delay death but not prepare us to die. It can explain the causes of and solutions for illness and injury but not give them meaning. It can improve quality of life without giving us a reason to live.

I’ve experienced this firsthand. Just over a year ago, I was admitted to the hospital with my first serious illness since my diagnosis. For the first time, I could give the hospital staff a name for my pre-existing disorder and outline how it might interact with the current situation. I also already had my routine treatment in place and was able to arrange to continue it throughout the episode. This all helped ensure a quick recovery with no noticeable long-term health consequences.

However, it did not help me through the spiritual chaos of this time. Medical science had no answers for the questions my ordeal asked me about God and myself. It could not tell me whether God is trustworthy, or if my soul could survive pain and fear. It could not remind me why I need not fear death, or explain how to live joyfully in the face of potential losses.

What got me through that ordeal was a dogged resolve to keep seeking God. I knew in my soul that if I stopped seeking Him, I would die. If not left with a dead body, I’d be a walking dead person. If life with God was hard, how much harder would life without Him be?

Because only Jesus can give abundance. Only He can go beyond and do the things that science and technology cannot. He not only created human life but gave it value and purpose – to love and be loved by God. He not only knows what’s going wrong in our broken bodies but promises to be with us in our brokenness. He not only knows the ins and outs of death, but robbed death of all its grim finality through His own death and resurrection, He not only has power to restore bodies but uses suffering and healing alike to restore souls.

God Redeems Suffering for Good Purposes

In Jesus’s hands, suffering is transformed into a platform for God’s glory. No matter the size of the suffering or the extent of the damage – if we let God own it, He will use it.

To redeem means to buy back. To claim or reclaim ownership of something lost or sold. To say that God redeems suffering is to say that, what others try to use for harm, God can use for good. Evil no longer has the final say on what our suffering achieves in our lives.

Have bad things come out of my rare disease? Some might say so. Reduced independence, multiple surgeries, increased hassle in accessing public places, communication difficulties, and more are all part of my story.

But none of these define my life. Ultimately, grace does. And there is no grace where there is no need, or a lack of resources to meet the need (“grace” means “gift” – not purchase).

If I did not have a rare disease, I might not have such a deep appreciation of the power of kindness. My family might have been less close-knit. I might have had more but less genuine friends. I would not have even met many of the wonderful people I know now (both two- and four-legged). I might have been overwhelmed by the sheer number of choices awaiting me after high school. Already stubborn and independence-loving by nature, I might at some point have become outright rebellious.

I would also never have had the opportunities to minister to people in the ways that I have now. People want healing, but they also need comfort, encouragement, and someone to walk alongside them on their journey. And I can offer that to some extent – because I, too, have suffered.

Of course, you might argue that if there were no suffering, people wouldn’t need these things to begin with. So why didn’t God just prevent all suffering?

I don’t have the whole answer. But I think of this: We don’t know what power is until we’ve been weak, what wealth is until we’ve been poor, what community is until we’ve been isolated. And what’s better than having these things, than having them and knowing their worth? In a way, lack of appreciation is true poverty, weakness, and isolation.

And we don’t know just how long and wide and high and deep God’s love for us is until we’ve seen it go with us through suffering – and then conquer pain and death.

Because He will. Having claimed victory over death through His crucifixion and resurrection, Christ is coming again to execute it. Having claimed forgiveness for our sin and given us access to the blessings of a restored relationship with God, He is coming to live among us forever.

Because that’s how complete His power of redemption is. Nothing can defeat His love for us.

Not even rare disease.

“He who did not spare his own Son, but gave him up for us all – how will he not also, along with him, graciously give us all things?…Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?…No, in all these things we are more than conquerors through him who loved us.”

–Romans 8:32, 35, 37 (NIV)

8 thoughts on “Not Even Rare Disease”

  1. Megan those are some of the most powerful, moving, inspiring, words that I have read or heard spoken. They had me both smiling and reading up. Thank you for pulling back the curtain into your heart and soul revealing both your struggles and your hope. Also for the very deep analysis about suffering in relation to hurt and hope with an absolute trust in God. You the perfect picture of grace under fire. So thankful I get to be your Pastor! Love you!

    Liked by 1 person

    1. Thank you, Lewis! Your words mean a lot to me. I’m blessed to have you as my pastor and to have a church family who loves and supports me the way you and the rest of our church do. Love you!


  2. I love you and your family young lady. I understand much of your blog. Brent got his diagnosis at 10. As you know he never talked or ever fed himself yet he taught me more in his 39 years than anyone I ever knew. God has blessed you with a wonderful gift.

    Liked by 1 person

  3. Wow Megan, this is by far my most favorite post you have written. You convey your thoughts so clearly and concisely and address the real issues that many of us face, in one way or another. I love what you had to say about “naming”, both the positive and negative side of that.
    The part of your post that thrills me most is everything you had to say about Jesus Christ, his redemption, his saving power, and the fact that when everything else is boiled away, HE is our Hope. I thank God for his provision of medicine while possessing the knowledge that in the end we must always rely on Him. May I say “seeking the provider, not the provision?” He is my goal! Thank you once again for sharing with us. ♥

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.