This post was originally published in September 2018. It has been updated to reflect what my life with a chronic illness looks like right now.
These are the confessions of a gastroparesis sufferer. A what sufferer? Gastroparesis. A chronic digestive disease. A disease that I live with.
On New Year’s Day of 2015, I wound up in the emergency room. I hadn’t been able to keep any food in my stomach for 24 hours, and I was miserable. This wasn’t the first time I’d dealt with stomach ailments. In fact, I’d basically been living with an ongoing “stomach ache” since I was in preschool. We just didn’t know what was causing it. I’d stopped eating dairy, been tested for celiac, and tried a “healthy diet” more than once.
However, I also had the lining of my stomach ripped at 16 from an acne medication, was hospitalized with a serious bout of mono at 19, and had a severe eating disorder that lasted throughout my teenage years. Let’s just say, I wasn’t exactly kind to my stomach, and the repercussions were much more extreme than I expected.
After a slew of medical examinations that didn’t provide us with any answers, my gastroenterologist suggested a gastric emptying scan. Nutshell version: they make you eat some radioactive eggs, then lay you beneath a camera, which follows the radioactive material through your system. The doctor kept joking that maybe I’d come out the other side as a superhero. It would also determine whether or not I had gastroparesis, a chronic illness I had never heard of before.
I was told that while most individuals can process something as simple as scrambled eggs in around 30 minutes or less, my digestive tract would take 3 times as long – or longer. Now imagine having to process a steak dinner or something much heavier. Needless to say, it all made sense why I was experiencing such severe pain immediately following even the smallest of meals. Not to mention the intense nausea that stuck around like an unwanted guest all the time.
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The diagnosis was official: I had gastroparesis.
This scary-sounding disease has altered my life drastically since that diagnosis. At first, I believed I’d be able to get back to “normalcy” after allowing some time to “heal.” How wrong I was. The bad news got worse when I discovered my allergy to the only FDA-approved medication for this disease, along with numerous food allergies that prevent me from typical gastroparesis diets. I had hoped for some sort of relief, but instead, I came to the realization that this was going to be a central part of my life for an indefinite period of time.
After starting jobs only to lose them a couple of months or weeks later (due to the constant need to call out of work sick), I decided to start looking for something to do from the comfort of my bed. This is when blogging chose me. I already had a following on Instagram, so I took the time to research and launch my website and over the past 7+ years, I’ve turned it into a full-time business
(*Disclaimer: after rebranding from fashion to book blogging at the beginning of 2021, I no longer made a full-time income with this blog. However, it is still a secondary source of income and I still do it full-time, though my primary income is made from social media management). I never thought my illness would provide such a blessing, but I’m incredibly thankful for the opportunity to do what I love every day.
Do I still experience the symptoms?
Yep. Nearly every day I wake up with tear-inducing pain ripping through my gut. Thanks, gastroparesis. I have to give myself an extended period of time to just sit in bed before actually getting up and moving about, because of the discomfort. Each time I eat, it hurts. Sometimes, I can physically feel a knot the size of a fist on my stomach, where the food hasn’t properly been digested. This is called a bezoar and regularly occurs in those with abnormal gastric emptying.
Every now and then, I’ll have an extreme flare-up of excruciating pain that keeps me bedridden for days at a time. During these periods, the discomfort and nausea are so intense that only 2-3 foods sound even somewhat pleasant to me. Sometimes, I’ll get mini flare-ups while I’m out and about, and they typically result in calling off whatever I’m doing, and going straight to bed (or to my car to curl up in a ball if a bed isn’t readily available). It’s tough never being fully in control of my body.
What can I do to cope?
Honestly, not much. I don’t say this to be dramatic. The reality is that there’s no true relief. I can take my nausea medication. I can pray for the pain to cease. But sometimes I just need to cry it out, then stay in bed to wait it out. I’m not sure if this will ever just go away, so I’ve learned to “deal with it” the best I can, and keep living my life. I’ve created my own kind of normal and I’m still learning every day how to navigate that in new ways.
But I look just fine! (Cue every spoonie ever rolling their eyes at how often they hear this).
Often, diseases aren’t seen by the human eye. Gastroparesis is one of those – at least it is for me. I do know people who have it so much worse, needing a feeding tube to even receive any kind of nutrients. The only time it’s noticeable for me is when I’m losing weight due to my inability to eat comfortably, or when my skin is wrecked because of the lack of gut health. Most often, it’s obvious when I’m doubled over in pain all of a sudden. Let me tell you, I’ve had to work through how embarrassing that is.
I also don’t want to spend 90% of my time complaining about my stomach, so I sometimes put on a brave face for social media and do my best to enjoy time with friends. However, I’ll often cancel meetings with clients, postpone lunch dates with family, or leave parties earlier because of my symptoms acting up. I do what I can when I can, and let my body rest on the days that are just a little too hard.
Gastroparesis sucks, but it doesn’t define me – or does it?
I’m oddly thankful for this illness, because, without it, I may have never begun this blog. I try not to let it take over my entire life, but it’s a huge part of the picture, and it’s had a massive role to play in who I am today. So I’m going to keep pushing forward, hoping for a cure, but also working towards my dreams and goals – never letting it hold me back. It will only propel me forward! This is why I chose such cheery photos to go along with this post. I’m working to keep that smile on my face, no matter what!