The Mighty Logo

Finally Being OK With Marfan Syndrome

The most helpful emails in health
Browse our free newsletters

Why do we sometimes associate our illness with negativity? There are negative parts to an illness, that is true. Emotional and physical pain are two big negatives. Financial constraints is one too. How about the wanting of being “normal”? In a world where we strive for normalcy, it can be challenging to look at the bright side of a disorder when you feel less than normal.

I was born with a rare genetic disorder called Marfan syndrome. It’s like I was given a basket of lemons the day I was born, and it took me 30 years to figure out how to make lemonade.

I can pinpoint the time I realized that hiding my illness was going to be necessary for the rest of my life. It would be my defense mechanism to keep myself safe. It was in high school that two of my fellow classmates followed me down the hall laughing and joking about the rods I have fused to my spine for scoliosis. As I walked as fast as I could to get away from them, I vowed to never be overheard talking about my shortcomings. I vowed never to look anyone in the eye because they could see the ugly truth of my disorder hiding behind them. I took that vow to heart, and only opened up to trusted friends for the next 10-plus years.

I cannot pinpoint the moment I finally became OK with my disorder. It was a slow change. Little by little I started talking openly about it again. It also helped that I have aged and matured over the last few years. I have started coming into my own, and realized it wasn’t a couple of boys who took away my confidence in myself. I did that. I chose to shut myself off from people. I chose to hide this.

Once I took responsibility for my own scared feelings I was able to be more open about my illness. I can define my disorder, but I don’t want my disorder to define me.

Finally finding my passion for my illness was the biggest step in being OK with it. I want to write about it, read about it, talk about it, and hopefully become more active in helping those like me.

It’s amazingly freeing when you finally accept your illness and let all the negative feelings fade away.

We want to hear your story. Become a Mighty contributor here.

Image by Ivan Mikhaylov

Originally published: October 17, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home