Chronic Illness: Looking Back

Gastroparesis
A Reflection on having a chronic illness.
0 Comments / 5 Shares

It was a Wednesday. I remember the day like it was yesterday. It feels like an episode of Grey’s Anatomy where I’m looking down at version of myself—a version I no longer recognize. Oh, I still see pictures of her. I recognize the smile, the hair, and the face. She still has the same physical features as I do. She still sounds like me, looks like me, and acts like me. But the girl in the pictures died long ago on a spring afternoon in the doctor’s office.

I look down on her body, my old body—the one without bruises from IVs; the one without a distended stomach from undigested food, possibly from yesterday’s meal; the one who can sleep without sleeping pills and can wake without uppers; the one who can eat a full meal without becoming sick; the one without pain behind every smile. As I see the twenty-four year old sitting at her gastroenterologist’s, I wonder if she knew that her world would be shaken that day and that some days it would feel like it had been shattered.

On April 30, 2014, I was told that I have gastroparesis, a debilitating, lifelong stomach disorder that would soon cause me unimaginable hurt and pain. Days would turn into weeks, which would turn into months and then years of unimaginable nausea.  The nausea was persistent, consistent, and unpredictable and could surface out of nowhere. A once normal diet turned into liquids and mushy food where I would actually end up eating baby food because it was better than a feeding tube.

And then there was the pain. The pain was unrelenting and powerful. It would keep me up at night and it would make me want to give up on many occasions. Looking back at that twenty-four year old sitting in the waiting room, I see the smile on her face when she finally received a diagnosis after years of searching for one. I wish I could scream at her that this was nothing to smile over, that she should not be happy about this diagnosis because nothing about this disorder causes happiness. I wish I could have told her to go back and pray that this test came back negative too and hope for another one to show something else, something easier to handle, something less debilitating. I wish I could tell her that her life would never be the same.

Yet that girl, so young, so ready to finally have an answer, was just so happy that there was something to finally attribute to years of pain. She thought there had to be something that someone, anyone, could do about it. She hadn’t become jaded and had faith that doctors could fix anything and would certainly fix her. She thought even though the disease was incurable, one of the treatments would work for her.

Looking back I want to hold that girl’s hand. I want to cry with her and let her cry about the life she was leaving behind from that day forward. I want to mourn all that she would be losing. I want to tell her that she would soon be diagnosed with four chronic illnesses along with dozens of other types of pain along her entire body. I want to tell her this would soon change everything. I want to tell her that she would soon lose her friends because they would tire of hearing that she was too sick to come see them. I want to tell her that people would soon lose interest and would complain to her more about their lives but never once ask her about her life. I want to tell her that she would see more doctors and specialists in two years than most see in an entire lifetime. I want to tell her that she would be poked, prodded, tested, cut open, and stripped down to the point that she felt almost no pain when the needle entered her skin and no embarrassment when she shed herself of her clothing. I want to tell her that she would end up having a six inch needle repeatedly shoved into her stomach, needles stuck all over her body, and tubes shoved down her throat to provide a shot of Botox all because it seemed worth it to rid herself of the pain—it was that bad. I want to tell her to eat anything she pleased and enjoy it because that pleasure and that freedom were about to be taken from her. I want to tell her that she would soon lose the job that she received her Master’s degree to pursue. I want to tell her that she would spend most days curled up on the couch fighting back tears and taking narcotics or other treatments. I want to tell her she would take more medication than a ninety year old when she was only twenty-six. I want to tell her to cry for all she was losing.

But I want to tell her not to live there. I want to tell her to hone in on every blessing, savoring the minutes of happiness—no matter how small—because some days there wouldn’t much to be happy about. I want to tell her to remember the days she doesn’t have pain and celebrate those things most people would consider miniscule. I want to tell her to enjoy herself on those good days even if it makes her have a few bad days. I want to tell her to live her life because she is far to young to let it all go and give up. I want to tell her to laugh as much as she can and to smile even through the pain no matter how fake it seems. I want to tell her to never blame herself for losing her friends, losing her job, or losing herself because it isn’t her fault. I want to tell her to never give up. I want to tell her to fight with all she has and to never stop fighting. But most importantly, I want to tell her to cling to her faith and to not let go for even a second. Because the truth was, that girl was about to go through the hardest time of her life and she needed as much faith as she could muster.

While pretty much everyone goes through challenging times, people with chronic illnesses don’t ever know when those challenging times will end and the sad thing is they may never end. Yet many think that when we are diagnosed, our desire to be our old self died along with our diagnosis. The truth is, our heart is still there even when our body is broken.

 

 

Comment on this story using Facebook.