Claudia’s life with SMAS, SLE, May-Thurner Syndrome, Nutcracker Syndrome, Pelvic Venous Disorder, and Gastroparesis

Hi! My name is Claudia Kobelak. I’m 21 years old, and outside of my health journey, one of my biggest joys is my two kittens, Coraline and Salem. They bring so much comfort and laughter into my life, which has been especially meaningful during difficult times. Over the past year, I’ve been navigating Superior Mesenteric Artery Syndrome (SMAS), May-Thurner Syndrome, Nutcracker Syndrome, Pelvic Venous Disorder, Systemic Lupus Erythematosus(SLE), and Gastroparesis. These rare health conditions have changed the way I live, but I’m learning every day how to adapt, advocate for myself, and keep moving forward.

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

Claudia’s Answer: The main conditions I live with are vascular compressions, including Superior Mesenteric Artery Syndrome (SMAS), May-Thurner Syndrome, Nutcracker Syndrome, and Pelvic Venous Disorder. I was diagnosed with SMAS about a year ago, and since then, more diagnoses have followed. My doctors believe I’ve actually had these compressions for my entire life, gradually worsening as I’ve gotten older, likely because of an underlying genetic connective tissue disorder that may be a form of Ehlers-Danlos Syndrome. In addition to these vascular conditions, I also live with Gastroparesis and Systemic Lupus Erythematosus (SLE). Each diagnosis has added another layer to my journey and made me realize how long my body has quietly been carrying these challenges.

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?

Claudia’s Answer: More than anything, I grieve the version of myself that existed before I went through the trauma of navigating the medical system. Those experiences have left me with flashbacks and deep anxiety around hospitals, which affect me every single day. I also miss the simplicity of being a carefree young girl who could play without pain and just enjoy life. Looking back, I didn’t realize how precious those moments were—being able to move freely and exist without constant worry about my body.

Question: What are the main symptoms you experience?

Claudia’s Answer: My symptoms are wide-ranging and affect nearly every part of my life. I deal with nausea, fatigue, brain fog, abdominal pain, dizziness, headaches, vision issues, joint pain, and nerve pain. In addition to those, I also experience joint subluxations, random allergic reactions, chest pain, back pain, leg pain, and pelvic pain. The combination of these symptoms makes daily life unpredictable and exhausting—it’s never just one thing, but rather a constant layering of challenges that I have to manage at once.

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

Claudia’s Answer: Before my health declined, I was a very driven and academically focused student. I took pride in my studies and worked hard, and that’s something I truly miss about myself. I started university a few years ago, but I’ve had to take my second gap year because keeping up with classes has been incredibly difficult. My pain and fatigue affect my day-to-day life in so many ways—plans often change last-minute, I need frequent breaks, and I sometimes have to leave places early. Even when I do make it out, flaring symptoms can take away from the joy of being there. My conditions have changed the way I participate in the world, and that loss is something I feel every day.

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

Claudia’s Answer: One of the toughest parts is feeling like I’ll never reach the potential I could have had if I were healthy. My future often feels blurry because so much of my energy is consumed by managing my health, instead of pursuing hobbies, school, or work. This has left me feeling like I’ve lost a sense of who I am outside of my illness. Another very difficult part is the loneliness and isolation. Even when people sympathize, no one can fully understand the exact pain, fear, and exhaustion I live with. I feel like I’ve missed out on so many parts of life,

not because I didn’t want to experience them, but because I’ve been fighting just to survive.

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

Claudia’s Answer: Becoming a strong advocate for myself has been the most important tool. Speaking up in medical settings and pushing for answers has made a real difference in the care I receive. For pain management, traditional medications don’t do much for me, so I focus on comfort instead. During flares, I rely on heating pads, blankets, a cold cap, and a dark, quiet room to create as much relief as possible. While these strategies don’t take away the pain, they help me get through the hardest moments.

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

Claudia’s Answer: My boyfriend, Conrad, has been my biggest source of support over the past four years. He comes with me to nearly all of my appointments and helps advocate for me when I’m too exhausted to advocate for myself. He’s spent countless nights by my side during hospital stays, and at home, he goes out of his way to create a calm, comfortable environment that makes me feel safe. I’ve also been lucky to have a few close friends who provide emotional support and remind me I’m not alone in this. Their presence makes such a difference.

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

Claudia’s Answer: I wish people understood that being sick is not a choice. None of us would choose this life, and every day takes an incredible amount of strength to get through. Chronic illness impacts every part of who you are, and while you can still find joy and purpose, it’s always shaped by the reality of what your body can or cannot do.

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