Finley’s life with CIDP, hEDS, POTS, AMPS, and Gastroparesis

Hi! My name is Finley Sells. I’m 19 years old, and I’m currently a social work major at my university. Studying social work has given me a deep appreciation for advocacy and support systems, both of which are incredibly important in my life. I also live with several chronic health conditions, including Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis (GP), and Amplified Musculoskeletal Pain Syndrome (AMPS). Here’s a glimpse into my life with chronic illness.

---

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?

Finley’s Answer: I really miss being able to dance. Ballet was a huge passion of mine, and I only had one year on pointe before I got sick. It was something I had worked so hard for, and losing it felt like losing a piece of myself. There’s something so freeing about movement, and I grieve the ability to express myself through dance without worrying about pain, fatigue, or balance issues. It’s one of the biggest things my condition has taken from me.

Question: What are the main symptoms you experience?

Finley’s Answer: My symptoms vary from day to day, but some of the most persistent ones include nausea, fatigue, and brain fog, which make it difficult to get through daily tasks. Abdominal pain is a constant struggle, and I also experience dizziness, fainting, and pre-syncope episodes that impact my ability to move around safely. In addition, I deal with headaches, vision issues, joint pain, and nerve pain, which all contribute to the overall challenges of managing my conditions. Each symptom on its own is difficult, but together, they create a daily battle that requires constant adaptation.

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

Finley’s Answer: Managing school while dealing with chronic illness is incredibly challenging, especially because I spend a lot of time in the hospital. Missing classes and falling behind can be stressful, and catching up takes extra effort when I’m already dealing with fatigue and brain fog. My feeding tube and medications also take up a significant portion of my day, making time management even more difficult. On top of that, using a wheelchair means I have to factor in extra time to get places, as accessibility isn’t always straightforward. Despite these obstacles, I do my best to stay on top of my studies and adapt to the circumstances as they come.

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

Finley’s Answer: One of the hardest things is keeping up with people, both socially and physically. Fatigue makes it difficult to be as present and engaged as I’d like to be, and spending so much time in the hospital can feel isolating. It takes a toll on my mental health to constantly be navigating medical appointments, treatments, and the unpredictability of my condition. There’s also the emotional weight of knowing that life doesn’t pause for me—I have to work twice as hard to keep up with school, friendships, and everyday responsibilities, even when my body is making it nearly impossible.

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

Finley’s Answer: Over time, I’ve learned that small adjustments can make a big difference in my daily life. One of the most helpful things has been learning how to properly maintain my wheelchair so that I can use it as comfortably and efficiently as possible. The disability community has been a great resource for tips and tricks on everything from chair upkeep to mobility strategies. Another game-changer for me has been discovering tubie pads, which have made managing my feeding tube much more comfortable. Finding tools that make everyday tasks easier has been essential in navigating life with chronic illness.

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

Finley’s Answer: The support from my friends has been incredibly meaningful. The people in my life who are flexible with plans, who don’t mind adjusting things to accommodate my needs, and who step in when I need help—whether that means assisting me after I pass out, getting me to the hospital, or simply being there to talk—have made such a difference. Chronic illness can feel isolating, but having people who genuinely care and show up for me reminds me that I’m not alone in this.

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

Finley’s Answer: I wish people understood that chronic illness doesn’t take a break. It’s something I live with 24/7, even on the days when I might look "fine." Just because I have moments where I seem okay doesn’t mean I’m not in pain, exhausted, or struggling beneath the surface. It’s a constant reality, and while I don’t expect people to fully understand, a little empathy and awareness go a long way.

---

You are never alone in how you feel. Reach out to us today!