The Moment I Realized I'm Grateful for My Rare Disease


Today while walking alone, I surprised myself. Deep in thought, I suddenly said aloud, “Thank you.”

It was in this moment I realized I’m grateful for my disease.

In a way, it’s become a mentor (it commands respect) and an instructor (it encourages patience). Lessons are delivered daily, and the more I listen, the more I learn. While the time has been relatively short since my diagnosis, these are the lessons I’ve learned so far:

 1. This is not without purpose. Deep in the depths of disease lies a purpose much larger than me.

2. Have patience. I believe “divine timing” is at work.

3. Be vulnerable. Share. Be openhearted and prepare for unexpected connections with others.

4. Be present. Disease shifts on a dime. Spending energy and worry on what could happen distracts from the joy in what is happening.

5. Gratitude heals. Being aware of what blessings I’ve received helps me recognize more when they arrive.

6. I am stronger than I think. How I respond is more important than the problem at hand.

7. Watch and listen. Lessons are delivered in a many forms. I’ll be taught, as long as I stay open to learning.

8. Practice compassion. Others around me have unknown struggles as well. I try to approach them with an empathetic heart.

9. Take the help. Say yes when someone offers to help. It’s not considered weak to accept generosity.

10. Self-care matters. My body is a perfect, magnificently designed gift.

11. Use toolsWalking and writing are powerful methods of therapy.

12. Do better. “Do the best you can until you know better, then when you know better, do better.” — Maya Angelou.

This is what I’ve learned so far, but I’m confident I’ll be shown more along the way. What are some of your best lessons learned?

Here’s to healing,

Molly

A version of this post originally appeared on Molly LaFata.

Want to end the stigma around disease? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

How I Find Eternal Light in the Darkness of Rare Disease

Dear Rare Diseases, I’m almost 25, yet I’ve spent nearly 10 years as a victim to all your destructive, lethal and horrifying ways. But I have yet to know each of you by name, for more rare and unknown illnesses lurk in the shadows, already attacking my fragile body as it desperately clings to life. [...]

To the Rare Disease That Entered My Life Uninvited, I Have This to Say to You

Dear congenital fiber-type disproportion myopathy, You might have others convinced you are a genetic condition that causes weak muscles and disability, but I know the truth about you. You are a thief. Before I even knew your name you began your crime. I was 8 years old, and you had occupied the cells of my [...]

This Incredible Video Is Raising Awareness for Rare Diseases

Saturday, February 28 is Rare Disease Day. According to RareDiseaseDay.org, more than 6,000 rare disease are currently referenced. Below is the 2015 video honoring people living with those conditions as well as those who have died from a rare disease. May 2015 be a year more awareness is raised, more effective treatment is developed and more lives [...]

16 Truths People Wish Others Understood About Rare Disease

“You have what?” “But you don’t look sick?” “I think maybe you’re exaggerating.” Living with a rare diagnosis brings with it a unique set of challenges. Research can be sparse, support groups can be hard to find, perplexed doctors fill your everyday life and invisible symptoms make it difficult to portray what you’re actually going [...]