Hannah’s experience with POTS, MALS, hEDS, MCAS, and Gastroparesis!

Hi! My name is Hannah Schneider. I’m 17 years old, and I spent 11 years doing gymnastics. It was a huge part of my life, and I loved the discipline and movement it gave me. Now, I live with several chronic health conditions, including Postural Orthostatic Tachycardia Syndrome (POTS), Median Arcuate Ligament Syndrome (MALS), Gastroparesis (GP), Hypermobile Ehlers-Danlos Syndrome (hEDS), and I am currently being treated for Mast Cell Activation Syndrome (MCAS). Here’s what my life looks like!

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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?

Hannah’s Answer: I miss eating without thinking twice about it. So many social experiences revolve around food, and I never realized how much I took it for granted until it became a struggle. I also miss having the energy to do things without constantly having to plan around my symptoms. There’s so much that my friends can do without hesitation—going out for spontaneous trips, staying up late, being active—while I have to consider whether my body can handle it that day. That loss of freedom has been one of the hardest things to accept.

Question: What are the main symptoms you experience?

Hannah’s Answer: My conditions affect multiple systems in my body, so the symptoms can be overwhelming. I experience chronic nausea, fatigue, and brain fog, which makes even the simplest tasks exhausting. Abdominal pain is a daily reality, and I often deal with dizziness, fainting, and pre-syncope episodes that make it difficult to feel safe in certain environments. I also struggle with headaches, vision issues, joint pain, and nerve pain, all of which fluctuate in severity. It’s a constant balancing act, trying to manage all these symptoms while still living my life as fully as I can.

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

Hannah’s Answer: I attend school full-time, but I have an Individualized Education Plan (IEP) that allows me to leave whenever I need to, and those absences are excused. This accommodation has been essential because my symptoms can become unmanageable at any time. Some days, I can push through and stay for a full day, but on others, I have to go home early because my body just can’t handle it. School itself is also harder because of the brain fog and fatigue, which make it difficult to retain information and stay engaged. It takes so much extra effort to keep up, but I do my best to make it work.

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

Hannah’s Answer: One of the toughest parts is constantly having to find new ways to adapt to this life. Nothing is ever straightforward—I’m always adjusting, making accommodations, and figuring out how to make things work despite my symptoms. On top of that, there’s the pressure to appear okay, even when I’m struggling. People don’t see the full extent of what I go through, and I don’t always want to explain it, so I end up pretending I’m fine when I’m really not. It’s exhausting to keep up that front, but sometimes it feels easier than trying to make others understand.

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

Hannah’s Answer: My doctors have worked incredibly hard to find medications that help manage my symptoms, and I’m extremely grateful for that. Without those treatments, I don’t think I’d be where I am today. Alongside medication, I also do physiotherapy and other strength-building exercises to help my body function as well as possible. It’s a long process, and progress isn’t always linear, but every small improvement makes a difference. Finding a balance between medical treatments and lifestyle adaptations has been key.

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

Hannah’s Answer: My parents have been my biggest supporters throughout this journey. They’ve stuck by me through everything, advocating for me, taking care of me, and making sure I have what I need. My best friends have also been amazing. When I was in the hospital, they visited me and even surprised me, making sure I never felt alone. Having people who genuinely care and show up for you in the hardest moments makes a world of difference.

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

Hannah’s Answer: I wish people understood that this isn’t easy. Every single day is a struggle, even if you can’t see it. Just because I’m functioning doesn’t mean I’m not in pain or exhausted beyond belief. Chronic illness is an invisible battle, and while I don’t expect people to fully understand what it’s like, a little empathy goes a long way. It’s not about pity—it’s about recognizing that life with a chronic condition takes an incredible amount of strength and perseverance.

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