The Continuous Grief of Chronic Illness

May 31, 2023

by Megan Marjorie

“I should be happy”

I repeated to myself in my head. I kept on repeating it to myself as that internal monologue turned into external sobs.

Alone in my room, I sat on my bed scrolling through pictures and openly wept.

A friend’s daughter’s wedding photographer quit an hour and a half before the wedding. Even though my cataracts were the worst, as they have ever been, and I was in such a bad connective tissue disease flare, I could barely hold up my camera.

I was their last option.

It was either me or a cellphone picture wedding. And I couldn’t leave them without a photographer. Known for doing nature photography, I doubted my skills with human photography on the best of health days. But in the state my body was in, I told myself there was no way these photos would end up good. Just probably ‘passable.’ They once in for all would get rid of my ridiculous dream of being a photographer.

I can’t imagine the brides terror as I strode into the room she was getting ready in with a giant smile highlighted with a nasal cannula across my lips and an oxygen concentrator on my back But photographing that wedding, I had never felt more joy and pain at the same time. It was a rush. It was everything I love to do. It mixed my extroverted personality with my love of telling a story. Capturing the perfect moment. It was everything I hoped it would be and more.

But It was a constant moment,  constant action, and that in itself was physically excruciating. So bad I had to excuse myself to the bathroom as tears from the physical pain threatened to escape in front of the wedding party. In the bathroom, I let a couple tears free. I took my inhaler, and bumped up my oxygen. Took every pain relief option I had.  I took Zofran to lower the nausea the pain was causing. I fixed my makeup, said a prayer, and went back and shot pictures for two more hours.

I didn’t expect these photos to be good. But, I was going to work my hardest to make sure they had memories of their special day.

When I got home, I deeply struggled just to make it up the 3 steps  to our front door. When I got inside, I told my mom about the wedding. I went to my laptop and uploaded and looked at the pictures… and my heart swelled with pride.

The pictures where good. A thousand times better times better than I thought they would be. And seeing these pictures, feeling that pride, feeling the possibility of “If I was trained, I could actually do this. I could pursue my dream “

Grief hit so hard. It felt like a rip tide pulling me under. My eyes completely lost  “sight of the horizon “ and my soul began to  drown in the sorrows of “What could have been.”

It took me the next two weeks to ‘recover’ from that wedding.

I caught a cold that turned into a raging upper respiratory infection due to my immune deficiency (CVID) that presently isn’t being treated. My connective tissue disease caused my joints and tendons to swell so badly after the wedding that I couldn’t walk without holding on to walls, or get off the toilet without a mobility aid for about 10 days.

I grieved the realization that in the state my body is currently in. My greatest dream could never be mine.

That’s the thing about the grief that comes with chronic illness. The grief of chronic illness, is grieving a loss. But a loss without closure of a funeral or graveside service. There is no reflecting on the beauty and promise that a ‘healthy life’ gives the world. It’s a loss With no resting place where you can feel connected to what was ripped from you. You’re left with the breathing ghost of what your life was and left over and over again. To face the imploding realities of what your life now  is.

It’s the continuous grief of the could have been, should have been, and the maybes. And sometimes the thing that hurts the worst is the maybes.

The grief comes in waves. Like watching your calendar fill with medical appointments and procedures . Your home filling with medications and medical equipment that you use to only see in sad movies.

It’s watching the illness that has taken over your body , piece by piece take more pieces of you, and wondering ‘how is this my life’ how is this me ?

It’s going to funerals and feeling immense guilt. Because somehow after narrowly escaping death’s eternal grip multiple times. It feels like a cruel twist of fate that you’re still here and they aren’t.

It’s the embarrassment  using mobility aids in public. The cruel glances as you use the handicapped parking spot. And the constant fear that you’re just slowing everyone down.

It’s being excited when your friends achieve their goals; graduating college, getting their dream job, traveling abroad, starting a family, etc. Yet at the same time, wanting to scream, cry, and throw a fit because of how badly I want to be able to do those exact same things, And wondering, How did I become this person.? Why does my life have to be like this?

It’s losing the little things about you that weren’t so little after all.

It’s losing trust in your body, the one thing that is supposed to carry  you in this life. Illness becomes the puppet master and you are left dangling by strings completely at its mercy. And to me, the one of the biggest parts of grief and chronic illness is that fear of losing that control. Being unable to plan, feeling as though your unable to dream. Because in the end when it comes to nearly every aspect of your life, your choices revolve around your illness. And you never truly know what it’s going to throw at you next.

The thing about chronic illness and grief, is that grief is constantly changing and constantly evolving. But at the same time so are you.

Through the months that turn into years, you grow. You change and learn to live side by side with a pain most would claim to be unbearable. A grief of constant losses and what could’ve beens that would and could be seen all-consuming. But you realize  only great love can cause a great loss.

And this pain has taught you there is so much still left in life that is worthy to love and to live for.

So you daily face the storm you thought would end you. Some days the waves are almost silent. Some days because of the pain you have experienced you see the most extraordinary miracles that few have had the privilege to notice. But other days the waves of grief  pull you under, leaving you gasping for air even though it hurts too much to breathe. But you keep goin because its the storm itself that taught you. That great joy and great pain can be experienced all at once.

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