Sarah’s journey with Gastroparesis and digestive tract paralysis

Hi! My name is Sarah Morris. I am currently studying to become a nurse and I also have four guinea pigs! I live my life with gastroparesis and digestive tract paralysis. Here’s some insight into my life!

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Question: What chronic health condition(s) do you have, and how long have you had it? 

Sarah’s Answer: The main ones that impact me are gastroparesis and digestive tract paralysis, which I’ve been living with for 11 years.

Question: If you were not born with your condition what do you miss the most from before you had it? What do you grieve from prior? What's one thing you were able to do before that you are unable to do now?

Sarah’s Answer: I miss being able to do everyday activities—things like going out, visiting the mall, attending school, working, and even basic tasks like doing laundry. These are things I used to take for granted, but as my health has limited my ability to do them, I’ve come to realize how much they contributed to my sense of independence and routine.

Question: What are the main symptoms you experience?

Sarah’s Answer: The main symptoms I experience are nausea, vomiting, presyncope, and fainting, along with abdominal pain, dizziness, heart palpitations, arrhythmias, and fatigue. 

Question: How does your condition affect your daily life and school?

Sarah’s Answer: Due to frequent hospitalizations and my overall health, I  haven’t been able to attend school in the traditional sense for quite some time. When I’m well enough, I do go, but that’s typically only a couple of days a month. The rest of the time, I try to keep up with my work remotely and do as much as I can from home. Most days, I’m sedentary, spending the majority of my time either in bed or on the couch. I’ve been making an effort to get out and do more, but my daily symptoms often make even the simplest activities difficult to manage.

Question: What are the toughest parts about living with this condition?  Be as specific as possible!

Sarah’s Answer: I believe the most challenging aspect of living with digestive tract paralysis is the mistreatment I’ve experienced from medical professionals. Because this condition is relatively rare, many doctors are unfamiliar with it, leading to poor treatment and harsh judgments. Despite numerous tests confirming a physical issue, it's not uncommon for doctors to dismiss my symptoms as psychosomatic or accuse me of being attention-seeking, often suggesting that it's all in my head.  These biases have lead to serious medical neglect and mistreatment, making an already challenging situation even worse.  

Question: What tips or strategies have helped you manage your condition?

Sarah’s Answer: Finding things that help alleviate symptoms has been key for me, whether it’s medications, non-pharmacologic interventions like heat or ice packs, or even simple distractions when I’m not feeling well. One of the most helpful strategies is reminding myself that what I’m feeling in the moment is temporary and that I won’t always feel this way. 

Question: What kind of support (from friends, family, or others) has been most helpful?  

Sarah’s Answer: Connecting with other people who are chronically ill has been incredibly helpful for me. It has provided a sense of community in an experience that often feels isolating, and I’ve been fortunate to connect with others who understand what I’m going through and can share helpful tips.

It’s also been valuable when my family and friends acknowledge my physical limitations and respect them, while still finding ways to include me. I’m lucky to have friends who understand that, often, all I can do is rest at home. They’ve adapted by changing plans, choosing to spend time at my place and doing something low-key, like watching a movie, instead of going out.

Question: What’s one thing you wish people understood about living with a chronic condition? 

Sarah’s Answer: I wish more people understood how unpredictable my condition can be. I might be able to go to school or work one day, but end up bedridden or in the hospital the next. It’s hard to pretend everything is fine when I return to school or work, as if I haven’t been struggling. One day, I might be able to walk around a bit, and the next, I need a wheelchair. I often worry that people will see me doing better and assume I’m cured, not realizing that just because I look okay for a few hours or can do a little more, it doesn't mean I’m not still suffering. My appearance often doesn’t reflect how I’m truly feeling.

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