Lilliann’s life with Cyclical Vomiting Syndrome and Gastroparesis

Hi! My name is Liliann Greene. I’m 22 years old, and I’ve been skydiving! Above is a photo of my dog, Basil! I live with cyclical vomiting syndrome and gastroparesis, two conditions that have shaped my daily experiences in ways I never could have imagined. Chronic illness isn’t just a part of my life—it influences everything, from the way I eat to how I navigate relationships, school, and the future. Here’s my story!

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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?

Liliann’s Answer: The thing I miss the most is having the energy to fully engage with life without constantly worrying about my body’s limits. Before my condition worsened, I never had to think about whether I could keep food down, if I’d have enough strength to get through the day, or if dizziness would take me out at the worst possible moment. Now, everything requires careful planning—when to eat, how to rest, when to push through, and when to stop. I grieve the simplicity of just being able to exist without my health constantly dictating my choices. There are so many moments where I feel like I’m watching life happen around me rather than fully participating in it, and that’s one of the hardest parts of losing the ability to just be without compromise.

Question: What are the main symptoms you experience?

Liliann’s Answer: My symptoms are unpredictable and affect nearly every part of my body. The most constant one is nausea—it’s always there, a background noise in my life that never fully goes away. Fatigue is another major struggle, making even small tasks feel exhausting. Brain fog makes it difficult to concentrate, while abdominal pain adds another layer of discomfort. I also experience frequent fainting and pre-syncope, which means I have to be cautious about where and how I move. Headaches, vision issues, joint pain, nerve pain, and dizziness are all part of the package, too. Each day brings a different combination of these symptoms, and I never know exactly what to expect when I wake up in the morning.

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

Liliann’s Answer: My condition influences almost every decision I make throughout the day. Nausea is a constant battle, which makes eating a complicated process. No matter what, I know that if I eat, I’ll likely throw up afterward, so I have to time meals carefully. This makes things like going out with friends, attending classes, or simply functioning in public much harder. Eating before leaving the house is risky, and eating while out is often out of the question. On top of that, throwing up at school is exhausting and embarrassing—it’s hard to focus on assignments and lectures when my body is actively working against me. The mental load of managing my symptoms while trying to stay on top of schoolwork is overwhelming, and some days, it feels like an impossible balancing act.

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

Liliann’s Answer: The toughest part is how inconvenient and unpredictable everything is. I can never just go about my day like everyone else—I have to constantly account for my symptoms, adjust my plans, and prepare for worst-case scenarios. The nausea alone is debilitating, but on top of that, my eating schedule is completely thrown off, and I’ve lost a significant amount of weight because of it. Fainting is another huge issue. It’s scary knowing that at any moment, I could lose consciousness, and I constantly worry about hitting my head or injuring myself when I fall. If I faint in public, I’m left completely vulnerable, which is not only dangerous but also humiliating. Chronic illness takes away a sense of security in your own body, and that loss of control is one of the hardest things to cope with.

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

Liliann’s Answer: Managing my condition is an ongoing process, and what works one day might not work the next. One thing that has helped is meditation—it gives me a mental break from the constant stress of being sick. Deep breathing is often recommended for my condition, but personally, I haven’t found it to be very effective. That being said, I still try to incorporate relaxation techniques into my routine because even if they don’t directly help my symptoms, they make it easier to cope with the emotional toll of chronic illness. Some days, it’s less about finding solutions and more about just surviving the best I can.

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

Liliann’s Answer: My boyfriend is my biggest source of support, and I don’t know what I’d do without him. He always catches me when I faint and never makes me feel like a burden. Instead of seeing my illness as an inconvenience, he genuinely loves taking care of me, and I’m so grateful for that. Chronic illness can be incredibly isolating, but having even one person who truly understands and is there for you makes all the difference. The people who stick around, who don’t get frustrated when you cancel plans or need extra help, are the ones who make this journey easier to bear.

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

Liliann’s Answer: I wish people truly understood just how life-changing chronic illness is. It’s not just about being sick—it’s about how it reshapes every single aspect of your life. Things that used to be simple suddenly require careful planning and energy that I don’t always have. Every decision, every outing, every meal comes with extra considerations. People often assume that chronic illness is just a rough patch or something you can push through with enough effort, but that’s not how it works. This isn’t temporary; it’s my reality. At the same time, I also wish people wouldn’t treat me like I’m fragile or incapable. Yes, my life has changed, and yes, I have limitations, but that doesn’t mean I’m not strong or capable. A little understanding and respect go a long way.

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