Waiting for Sunshine When Chronic Illness Leaves Me 'Stuck' With My 'New Normal'


The weather in my world hasn’t been the best recently. No, it has been fierce and unseasonable. My skies have been quietly kissed by gray clouds that have grown into ominous storms. I cannot go outside without being threatened by the bitter storms that seem to be growing ever closer. Still, not all of the days are so brutal. Most of the time, excepting the little gray whispers in the sky, so tiny you can almost forget them, the weather is clear and calm. Yet, I so anxiously await the day when the sun comes out, and I am able to bask in its warmth. The anticipation for warmer days filled with sandy toes and popsicles fills my mind. But currently, I am in a place so painfully far away from this. I am still waiting for sunshine.

I am tired of being stuck in a place where the sunny days are far and few. My heart and soul continue pulling me towards a warmer, more inviting climate. But, my body will not allow me to board the boat to that far away land. So, I must stay put in this dreary place for the time being. Still, I am waiting for sunshine.

My life hasn’t been unicorns and rainbows recently. I am stuck. And it is painful. It hurts my soul to be stuck in a body that cannot fulfill my heart’s desires. And it is so excruciatingly painful to see others living the life you once envisioned for yourself. To look back at the series of events that landed you in this moment, the present that is so painfully different from what it should be. The present that, quite honestly, doesn’t feel like much of a gift. To look at all that others have, and for the first time in your life, feel jealousy and subsequent guilt, because they are able to live the kind of life you ache for.

two friends standing on railroad tracks holding hands and smiling

I wheeled into my freshman year, not walked. I never got to go to my first high school football game. I’ve missed Christmases and Thanksgivings. I never had the chance to earn my national team bag or play high school sports. I might never get the chance to become a licensed driver or swim in a meet or run a 5k again. I may not get to go to the college of my dreams, and I probably will never be able to perform surgery, my dream since pre-K. And frankly, I don’t know if I’ll ever be myself again.

I’ve missed out on a lot. Milestones, holidays, parties, you name it. And usually, it’s OK. I can deal with it. It’s whatever. But other times, it sucks. And right now, dealing with it is particularly hard. It’s brutal coping with the loss of something I never had to begin with. My hopes, my dreams, even my future. None of it seems real. More nights than I can count, I stay up unable to fall asleep thinking about how impossibly real it all is. Continually getting stuck thinking about the “what ifs” and the “should have, could haves” instead of the “I cans” and “I wills.” The reality is that those hopes and dreams, well, they’re gone. But I’m stubborn. And I can’t stop thinking.

Nothing is the same.

Nothing will ever be the same.

And maybe that’s OK. Maybe it’s a good thing. Maybe I’m growing as a person or finding myself or whatever.

the author in a hospital bed holding up cards and envelopes

But I am so tired. I am tired of this “new normal” that I so passionately refuse to get used to. I am tired of hopeful wishing and watchful waiting for things to just “get better.” I am tired of missing out on concerts and learning how to drive. I am so tired.

The truth is my life, no matter how much I smile, no matter how “inspiring” or picture perfect my life may look, is far from that. The eternity of being trapped in a body that is slowly falling apart from the inside out is unbearable. I am continually stuck in a world of storms and darkness, the sun hiding behind the clouds, just out of reach.

I reach up to touch it, to capture its glow.

But just as I grasp my hand around it, my legs give out and I am sent tumbling back to earth.

So, for now, in the midst of my rainy, stormy, ever-changing world, I am waiting for sunshine.

Image Credits: Ceara Hughes

This story originally appeared on Ceara’s blog.


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


Related to Chronic Illness

businessman sitting head in hands on the bed in the dark bedroom with low light environment, dramatic concept, vintage tone color

The Courage It Takes to Get Through Cold and Flu Season as a Spoonie

This article is not giving medical advice. I am not a doctor. This is just observations from someone who has walked a path of illness and the problems encountered. Please consult your doctor before trying any new medication or making changes to them. Having been chronically ill for well over five years now has been [...]
lady gaga

What Lady Gaga's Radical Authenticity Means for Chronically Ill Women Like Me

Lady Gaga has had a big year: her new film, “A Star is Born,” topped $350 million at the box office, her Elle Women in Hollywood acceptance speech advocating for a new way to talk about sexual assault and mental health went viral, and she is about take the stage once again for her residency [...]
mother and young daughter on park bench

I Asked Chronically Ill Moms for Parenting Advice. Here Are Their Top 25 Tips.

Parenting is hard. When you’re chronically ill it throws even more complications into the mix. I recently spoke with some chronic moms about what it’s like to parent when you’re sick. The consensus: It’s tough! But… think about all the good you can teach your child. You have a unique perspective and can be a [...]
18 Common 'Pet Peeves' of People With Chronic Illness

18 Common 'Pet Peeves' of People With Chronic Illness

Everyone has their own unique “pet peeves” – things that irk them to no end! But many of those with chronic illness may have some pet peeves in common. After all, there are so many stigmas and misconceptions about illness, and it can be frustrating to encounter the same problems time and time again. Mighty [...]