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, a serious bout of mono, and a severe eating disorder that lasted for several 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, my gastroenterologist suggested a gastric emptying scan. Nutshell version: they make you eat some radioactive eggs (I thought I was going to become a superhero), then lay you beneath a camera, which follows the radioactive material through your system. I was told that while most individuals can process something that simple in around 30 minutes or less, my digestive track 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.
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 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 to book blogging at the beginning of 2021, I no longer made a full-time income with this blog. However, it is still a source of income and I still do it full time, though my primary job is social media management). I never though 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. Every day I wake up with tear-inducing pain ripping through my gut. I have to give myself at least an hour to 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 digested. Every couple of weeks, I’ll have a “flare up” of excruciating pain that keeps me bedridden for days at a time. During these periods, the nausea is 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).
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.
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. Mine is one of those. The only time it’s noticeable 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. I also don’t want to spend 90% of my time complaining about my stomach, so I put on a brave face for social media and do my best to enjoy time with friends. However, I’ll often cancel photoshoots, postpone lunch dates, 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!
Renee || Getting Fit Fab says
I’ve never heard of this gastro-disease, how awful. The pain you’re talking about sounds similar to what I experienced when I had open ulcers on my stomach lining and esophagus. That really sucks that you can’t take the medicine because you’re allergic to it and the diet. Whew, rough girl. But you’re right if you didn’t have this we wouldn’t be able to read your blog or see these fabulous outfits. Keep smiling! <3
Donna says
Amazing how you worked hard to find the good out of an unbelievably challenging illness. So proud of you. Keep fighting!
Jheelam says
You look so cheery and glowing in all of your pics, it definitely showed that you’ve taken this horrible disease by its hand and came away victorious. More power and good health to you. 🙂
Stefanie says
You are so strong Steph!! I hope one day they find a relief for you that helps you cope with the pain and nausea! But it’s crazy and amazing how something so terrible has led you to something so great! Always proud of you!! <3
September says
You still need to explain the term spoonies!
Donna says
Amazing how you worked hard to find the good out of an unbelievably challenging illness. So proud of you. Keep fighting!
Jheelam says
You look so cheery and glowing in all of your pics, it definitely showed that you’ve taken this horrible disease by its hand and came away victorious. More power and good health to you. 🙂
Sarah Lindner says
I have never heard of Gastroparesis. Thank you so much for sharing your story with us and how you work through the pain daily. I can’t imagine how you must feel everyday. I hope they find a cure one day!
XOXO
Sarah
September says
You still need to explain the term spoonies!
Stephanie Whitman says
the word itself is linked at the bottom of the post in pink 🙂 just click it to learn more!
Kim says
I have never heard of Gastroparesis but it definitely doesn’t sound fun. Thank you for sharing your story and I’m so glad you are coping with it. Hopefully a cure is on the way in the future!
xoxo,
Kim
Avani says
Oh.. No. I had never heard of this before. Surely doesn’t sound like fun
Kileen says
I’m so sorry to hear babe. It definitely sounds life changing and I pray and hope that you will find some sort of relief soon. Sending you lots of love and positive vibes!
Kileen
cute & little
Beth says
I think it is awesome that you are able to take this very uncomfortable fact of your life and focus on the positive. I also hope that one day a medication will be approved for this that you can take.
Kileen says
I’m so sorry to hear babe. It definitely sounds life changing and I pray and hope that you will find some sort of relief soon. Sending you lots of love and positive vibes!
Kileen
cute & little
Amanda says
I have never heard of Gastroparesis before. Thanks for sharing your story -hopefully this post will help someone else that has it too.
Amanda says
I have never heard of Gastroparesis before. Thanks for sharing your story -hopefully this post will help someone else that has it too.
Jasmine Vargas says
underneath that beautiful smile, you sure hide any pain issues you are having. I hope that one day you can find some relief to all of this. I’m a baby when I am bloated, I can’t imagine dealing with that.
Mollie says
Omg Stephanie – I had no idea you we’re going through this! I’ve never heard of Gastroparesis before, but it doesn’t sound fun 🙁 I am so happy that through all the pain and lost jobs you were able to find blogging and take it into a full time career, and one that work around your own schedule. I hope they make a new medicine that you aren’t allergic to! Thank you for being so open and sharing your experience with this disease!
xx Mollie
http://www.molliemooreblog.com
Mollie says
Omg Stephanie – I had no idea you we’re going through this! I’ve never heard of Gastroparesis before, but it doesn’t sound fun 🙁 I am so happy that through all the pain and lost jobs you were able to find blogging and take it into a full time career, and one that work around your own schedule. I hope they make a new medicine that you aren’t allergic to! Thank you for being so open and sharing your experience with this disease!
xx Mollie
http://www.molliemooreblog.com
Stephani says
Thanks so much for sharing your story with us. I cannot imagine how difficult and challenging this could be but you seem so strong and I am so glad you’ve found an outlet that makes you happy – something you can do from home!
Ada says
I can’t even begin to imagine how hard it is to deal with this. Thank you for sharing your story!
Liz says
Oh my goodness! I have never heard of this before! You are such an inspiration and I think it’s amazing that you are bringing light to this!
Laura || Walking in Memphis in High Heels says
This is such an amazing story! It’s so true that just because we can’t see that your suffering physically doesn’t mean you aren’t suffering. I am so glad that it’s lead you to blogging and a life that can be altered to be able to work with this disease and push through it. You keep smiling girl!
Deborah says
Thank you for sharing your story with us. Your last point actually really stood out to me. My mom has rheumatoid arthritis and while people say she “looks fine” it’s the invisible diseases that can really get a person.
Liz says
Oh my goodness! I have never heard of this before! You are such an inspiration and I think it’s amazing that you are bringing light to this!
Megan says
I have never even heard of this disease before your post. Thank you for enlightening us and making us aware.
Laura says
I am so sorry to hear that you’ve been experiencing this sort of pain since preschool. I had never heard of this before and I can only imagine how painful it is as you’ve described it quite well. Invisible diseases can be just as hard to cope with as those that are out in the open. Sending you lots of hugs and thanks for sharing your story!
xo, Laura
kelly Fordon says
This definitely puts things into perspective for me. For as long as I can remember I’ve experienced some kind of stomach discomfort (nothing too crazy, just sensitivity.) I couldn’t even imagine going through this kind of pain every day. Sending good vibes your way!
Cheers x
Kelly
Style Hacks for Fall
Jasmine Boswell says
okayyy you are the absolute cutest!!
Jasmine Boswell says
okayyy you are the absolute cutest!!
Avani says
Oh.. No. I had never heard of this before. Surely doesn’t sound like fun
Kim says
I have never heard of Gastroparesis but it definitely doesn’t sound fun. Thank you for sharing your story and I’m so glad you are coping with it. Hopefully a cure is on the way in the future!
xoxo,
Kim
Stephani says
Thanks so much for sharing your story with us. I cannot imagine how difficult and challenging this could be but you seem so strong and I am so glad you’ve found an outlet that makes you happy – something you can do from home!
Sarah Lindner says
I have never heard of Gastroparesis. Thank you so much for sharing your story with us and how you work through the pain daily. I can’t imagine how you must feel everyday. I hope they find a cure one day!
XOXO
Sarah
Stefanie says
You are so strong Steph!! I hope one day they find a relief for you that helps you cope with the pain and nausea! But it’s crazy and amazing how something so terrible has led you to something so great! Always proud of you!! <3
Molly | Transatlantic Notes says
I really appreciate how you’ve explored your experiences in this post; it was an education to learn about gastroparesis as I’d not heard of it before. It sounds like you have an incredibly resilient attitude about it all and I found that so encouraging. Thank you for sharing this!
Jaya Avendel says
I cannot imagine living with a chronic illness akin to yours, though I experience it so poignantly through your well-told story! That you do what you can when you can and remember to keep smiling and finding positives is a wonderful attitude to adopt and stick to.
I have Lyme’s Disease. I discovered I had it after suddenly developing a fever that lasted three days. Now I am able to manage it with herbs and supplements, but it does not affect me as drastically as yours affects you.
Thank you for sharing this amazing personal tale!
Neely Moldovan says
As a fellow chronic illness gal I applaud you! I had no idea. But I know so many benefit from you sharing your story!
Ashley@AttemptsAtDomestication says
That sounds so difficult to deal with! It’s amazing though that a chronic illness pushed you in a different direction to start your own career path! That’s like the ultimate lemons and lemonade!
Lizzie says
Thank you for sharing this! I knew that you had it but didn’t quite understand the extent. I have many food allergies so I definitely feel you on the eating thing. It’s so frustrating to not really know what’s going on and then to have to drastically change your lifestyle because let’s be honest, food is central part of our life and not many people understand when these things happen. I’m glad that it did bring about the blog as a positive from this experience but I sure do hope you get some relief in the future <3
Lizzie
http://www.lizzieinlace.com
Donna Whitman says
I’m so sorry that you have had to deal with this most of your life, my sweet daughter, but I have watched it grow you, strengthen you, and shape your destiny as a writer and a manager for multiple businesses, including mine! You have more creativity in your little pinkie than so many and you use those talents to help others. I am amazed at what you accomplish from your bed, but I’m more amazed by who you are. An amazing, powerful, thoughtful and loving woman. What a force you are, Stephanie. I’m grateful to be your mom.
Corinne says
Oh my word, this sounds awful, I’m so sorry you go through this on a daily basis. I hope there are some medical advances soon that allow you to love more comfortably.
Simona says
I know you mentioned a few times on some of our recipe posts that you are allergic to this and that ingredient, but I had never understood just how serious this was! Cristina mentioned you were struggling with a condition, but again, as someone who has a stomach made of iron (that’s how I like to call my babe) I couldn’t really understand. With the years, and the many terrible things I have fed it, my once-called iron box is now a little sorry for itself from time to time, but I do hope your situation can improve, even if just a little bit. Taking your time to respond to your body, though, is the best example we should all take from this.
Tina says
I’m so glad I fumbled upon your post. I have been struggling for 5 years with symptoms that I was struggling with. I’ve had every test that can be ran & reran…. About 2 years ago I was diagnosed with Jackhammer Esophagus & though “Thank God they finally found something!” Although I was sure there was more going on with me & I was dismissed by the doctors. Well finally I continued to Not remain silent & the one test that had Never been done was finally done. I was diagnosed with Gastroparesis. I also have a lot of food allergies & I’m learning that I just can’t do the food list that they suggest. I am truly struggling & need help navigating through this. If you could share any avenues for me to find things to eat I would greatly appreciate it! Thank you for sharing your story.
Stephanie Whitman says
I’m really glad you were finally able to receive a diagnosis that led you to some true answers! I know how challenging that process can be. Unfortunately, my food allergies are really bizarre (avocado, apples, turkey, potatoes, onion, pineapples, soy, pistachios, turkey, green beans, etc.) so despite having seen nutritionists to help with a “gastroparesis diet,” I really have to just eat what I can when I can rather than maintaining a specific formula. However, you may benefit from seeing someone in that field to help you navigate foods that will help you, especially if your food allergies are more along the lines of “normal” (gluten, dairy, nuts, fish, etc.) because they can definitely form a diet that’s more specific to that!