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When Doctors Tell You 'Your Life Is Going to Be Difficult'

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A few years ago, I watched some medical television show. And though I forgot which one, this very memorable scene still resonates with me.

A doctor was going over test results with a mother who found out her child had my genetic disorder, 22Q11.2 deletion syndrome, or DiGeorge syndrome. The mother sighed as the doctor explained the condition, first stating, “Your child is going to have a very, very difficult life.”

Something about that particular scene and the mother’s stoic response struck a nerve in me.

Yes, I have the syndrome and life is difficult. Just having a disorder makes my world feel like a big disorder. As I’ve gotten older, I’ve felt more capable to manage these curve balls. When I received the diagnosis of 22Q, I had the same stoic response and thought to myself, “No wonder life has been so hard!” I didn’t find out until I was 24 and trying to start adulthood.

I’m not sure if you noticed this when receiving a diagnosis—but doctors never say, “Your child (or you) is going to have a difficult life…but, life can get better.”

It wasn’t until later down the road when I was able to say, “life does get better.”

I knew it wouldn’t get easier, but it could get better.

What doctors and physicians have said to me planted this idea in my head that my life was going to always consist of struggles. It’s a challenge to eliminate that negativity, but it’s also a challenge to grow up with that life will always be difficult canopy over my head. I began doing art as a meditation to block out those words, to focus on something I can do. I started doing art as a means to cope, to have something that makes me smile.

Life is full of struggles, hardship and adversity. We all have things we can and can’t do. These days, it’s easy to take the negativity of others and embed it into our conscious and subconscious minds. I am a realist-based thinker, which others tend to view as pessimistic. But it’s not pessimism. I am a positive person, too, but I don’t use positive thinking to mask the reality of my circumstances. I simply keep my mind grounded in the present moment and do the things that bring me joy, as I’ve always done.

Like anybody else, I’ve had successes and failures, learned from costly mistakes, and had to bounce back. I know that I will never be somebody with a blissful perfect life, and that’s OK. Nothing comes easy-peasy, and that’s OK, too. My struggles, hardships and challenges, I feel, have made me thicker-skinned and stronger person. In the past, people have fooled me left and right. Now, I can clearly see when someone is trying to fool me or is not being honest.

Obstacles disrupt our paths to reveal a bigger picture to us. That’s what I like to believe. And yes, despite my difficult life with a genetic disorder, I also feel life has gotten much better. But, I’ve worked tirelessly to make it better with the help of counseling, attending to my chronic pain, depression, and anxiety. Everyday, I try to do things that help me get by. I’ve fought through when odds were against me. I’ll never not do something because I fear it will be difficult.

For me, mindset is everything.

To keep myself afloat, I have to focus on my mental and physical health daily. But today, I am grateful for everything that has challenged me. I am grateful for the hurdles and hardship I’ve battled. I am also grateful for how far I’ve come.

Originally published: August 15, 2018
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