Hannah’s life with MCAS, POTS, CFS/ME, Reactive Hypoglycemia, and Long COVID

Hi! My name is Hannah. I’m a huge animal lover, and I have an amazing service dog who helps me every day, providing support both emotionally and physically. I also have a passion for fishkeeping—there’s something incredibly calming and peaceful about watching fish swim around. Alongside my hobbies, I navigate life with multiple chronic conditions: Mast Cell Activation Syndrome (MCAS) for five years, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), and Postural Orthostatic Tachycardia Syndrome (POTS) for two years, as well as Long COVID and Reactive Hypoglycemia. My life has been a journey of adapting to these conditions, and I’m excited to share my experiences with you.

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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 the days where I didn’t have to constantly worry about something bad happening to me. Life before illness felt much more carefree, and I didn’t have to plan everything around my health. The world didn’t revolve around being sick, and I took for granted the freedom I had to make spontaneous plans and go out without a second thought. Now, everything from social gatherings to even simple errands has to be meticulously planned, and that sense of freedom I once had is something I really grieve. I miss being able to live without these constant restrictions and just enjoying life as it came.

Question: What are the main symptoms you experience?

Hannah’s Answer: My condition comes with a range of symptoms, which include nausea, extreme fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision problems, joint pain, nerve pain, and dizziness. On top of these, I also deal with low blood sugar, which causes weakness, adding another layer of difficulty to my day-to-day life. It’s not just one symptom that I manage—it’s a combination that varies throughout the day, making each day unpredictable. Navigating these symptoms means constantly adjusting and finding ways to keep moving forward, even on the hardest days.

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

Hannah’s Answer: My health makes it incredibly difficult to attend school full-time. I can barely manage to be there consistently, and when I do, I’m often not able to stay the whole day. I have to plan everything around whether or not I’ll have the energy to do something. On top of that, I have to carry around a bag filled with medical supplies just in case, which is exhausting. I also have my service dog with me, and while she’s a huge help, she adds another layer to managing my condition. It’s a lot to juggle—trying to keep up with schoolwork, managing my symptoms, and living life while constantly factoring in my health.

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 not being where I “should” be at my age. I’ve watched my peers continue with their lives—graduating, getting jobs, making plans—while I’ve had to step back and adjust my expectations. Seeing people move forward while I have to find a different path is emotionally difficult. It’s hard to deal with the feeling that my life is on pause, especially when it feels like the illness is dictating my every move. The loss of those typical milestones has been a big challenge.

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

Hannah’s Answer: The support from my service dog has been life-changing, as she helps me with mobility and provides emotional support when I’m feeling overwhelmed. I also rely on mobility aids, which have been crucial in conserving my energy and helping me get through the day. Managing my condition means listening to my body and knowing when to rest or push through, and these tools have been key in helping me maintain some level of independence while coping with my symptoms.

Question: What kind of support (from friends, family, or others) has been most helpful? Hannah’s Answer: The most helpful support I’ve received has come from people who are simply there for me—whether it’s listening when I need to talk or offering a hand when I need help. My mom’s advocacy for me has also been invaluable. Having someone who fights for the support I need and stands up for me when others might not understand has been a game-changer. The emotional and practical support from my family and close friends has made this journey more manageable and helps me feel less alone in this experience.

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

Hannah’s Answer: One thing I wish people understood is that we are trying our best. Just because our lives look different from what others expect doesn’t mean we aren’t putting in every ounce of effort to manage our health and our lives. It’s not about choosing to be sick or wanting attention—it’s about surviving and navigating the ups and downs, even when it feels like everything is stacked against us. We’re doing everything we can, even if it doesn’t always show on the outside.

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