When You Grow Up

Rare disease changes your story, but you have the power to direct the rewrite

As a child, when I dreamed of my adult life it did not include a rare disease. Like most chlidren, I don’t recall there being anything but progress and accomplishment and happiness in those childhood dreams.

This was brought to mind recently when I saw a production of “Matilda The Musical” staged by our local community college. At the beginning of Act Two, swings descended from the ceiling and the children began the song “When I Grow Up.”

When I grow up

I will be strong enough to carry all

The heavy things you have to haul around with you

When you're a grown up

Do you remember those days? The vulnerability you felt as a child was balanced with knowing that you’d be invincible as an adult. You’d be brave. You’d be tireless. You’d be strong enough to handle whatever life threw your way.

And then came your diagnosis. You felt weak. Scared. Out of control. What would your life become if the things you had to haul around were too heavy for you?

When I grow up

I will be brave enough to fight the creatures

That you have to fight beneath the bed

Each night to be a grown up

Sure, you knew there would be challenges. But this? At least the creatures you imagined fighting would fit under your bed. Your rare disease attacks your body like an enormous monster you can barely keep inside your closet. Sometimes it grows to fill up the entire house.

Unfortunately, this creature has a companion, a sinister twin that is just as gnarly and ugly and threatening. This creature’s focus is on your mental well-being. While the first one keeps you busy fighting the physical challenges of life with a rare disease, this one wages war against your mental health in ninja-like fashion. Resentment. Grief. Anger. Anxiety. Uncertainty. It attacks with stealth, often when you least expect it, and disappears before you can counter.

Depending on your condition, a rare disease can demand a great deal of attention and energy. Responding to the disease itself is often rivaled by the efforts needed to manage care plans, insurance, doctor visits, hospital stays, and more. From this perspective, having a rare disease can feel like a full-time job.

This often leaves little time for managing the mental health aspects of life with a rare disease. With May being Mental Health Awareness Month, it’s a good time for us to evaluate the full impact of our rare disease — and to reflect on ways to help ourselves carry the heaviness of the hand we’ve been dealt.

One of the best ways to cope can actually be found in the closing words of “When I Grow Up.” 

Just because I find myself in this story

It doesn't mean that everything is written for me

If I think the ending is fixed already

I might as well be saying

I think that it's ok

And that's not right

We may have a condition we didn’t ask for, but that doesn’t mean it has the power to write our story for us. We can reclaim the power to rewrite our own story in a way that still brings us fulfillment and joy. I’ll admit that it took me a long time to do this. Years, in fact. But I came to a place where I realized three things:

1. My story will never be what it once was.

2. My rare disease has redefined my life.

3. But I have the power to write my new story — because, after all, it is MY story.

I’m still writing that story, and this newsletter is part of the process.

What about you? How do you cope with the mental toll of a rare disease? How do you haul the heavy things and fight the creatures? More importantly, how can you rewrite the story that seems to have been written for you? Let’s talk about it in the comments …