Searching for a Diagnosis

Makenzie Kaput is a 22-year-old who knows all too well the frustration of living with symptoms while still searching for an autoimmune diagnosis. It began as pain, stiffness, and swelling in her fingers and evolved into widespread joint issues and fatigue that disrupt her daily life. Despite seeing specialists and undergoing countless tests, she still lives with the uncertainty of an undiagnosed autoimmune disease. Her experience has led her to join the Autoimmune Association’s Young Adult Advisory Council, where she found community, purpose, and the opportunity to amplify the voices of other young adults facing the same diagnostic limbo.

Makenzie lives in Plainfield, Illinois with her parents and her twin brother. She graduated from the University of Wisconsin-Parkside in 2023 after playing four years of Division II soccer. Now, she’s a middle school social studies teacher and a youth soccer coach, channeling her energy into inspiring young minds, even on her toughest days.

Her symptoms first appeared during her junior year of college. After a weekend of soccer games in the snow, she began experiencing swelling and pain in her fingers. At first, she assumed it was due to overuse and perhaps related to the cold weather. But as the symptoms continued and spread to her shoulders, hips, knees, and ankles, she knew something was wrong. When her primary care physician referred her to a rheumatologist, everything changed.

The once-active student-athlete became unable to put on her own shoes or even open the door to her apartment. The muscle stiffness and weakness were overwhelming. “I felt like I was losing so much of myself,” Makenzie shared. “I couldn’t play soccer, I was too tired to hang out with friends, and I missed more class than I wanted to. It takes so much more mental energy than people realize to be chronically ill.”

Her life shifted: from a packed schedule of classes, practices, games, and socializing to a cycle of doctor’s appointments, blood draws, trial medications, and ongoing exhaustion. She experienced a phenomenon many patients understand: hoping a doctor finds something wrong just for the validation and a path forward. “I remember feeling torn between wanting everything to be okay and secretly hoping they’d find something ‘remarkable’ because then maybe they could help,” she said.

Managing Life with an Undiagnosed Condition

Though Makenzie still doesn’t have a specific autoimmune diagnosis, she’s made strides in managing her symptoms and reclaiming parts of her life. She’s found some stability through lifestyle changes, including going gluten-free, and returning to activities that ground her. She was eventually able to rejoin the soccer field during her senior year,

Still, the unpredictability of undiagnosed autoimmune disease continues to weigh on her. “The most frustrating thing for me has been how subjective autoimmune diseases can be,” she said. “Symptoms overlap across so many diseases, and my test results have been inconsistent. It’s hard to feel like you’re getting closer to answers when nothing ever seems to add up.”

Makenzie emphasizes how crucial it’s been to find the right medical team, especially one that listens. “The hardest part was when no doctors could find anything ‘wrong’ with me, so they wouldn’t prescribe anything to help. I was in pain, exhausted, and barely able to move my fingers. Once I got a doctor who actually listened and prescribed something to help with fatigue and pain, it made the wait more bearable.”

She also encourages others who are in diagnostic limbo to keep participating in life in whatever way they can. Early on, when she couldn’t practice with her soccer team, her coach allowed her to join in weight training. “Just being there a couple of days a week gave me a sense of purpose. My strength coach even gave me modified workouts so I could stay connected and active. That really helped me both mentally and physically.”

Tips for Navigating the Diagnostic Journey

• You are not alone—and your symptoms are real. Trust yourself, even when you feel dismissed.
• Ask plenty of questions during appointments. This Question Prompt List can help you identify the most important questions for your situation.
• Don’t hesitate to seek second (or third) opinions. Different providers may offer new perspectives or insights, and sometimes it takes time to find the one who truly listens.
• Join online support groups or social media communities. Hearing from others who are also seeking answers can provide comfort, validation, and helpful suggestions.
• Keep a detailed symptom journal. Tracking your experiences over time can reveal patterns and help your medical team better understand your condition.
• Be your own advocate. Speak up, share your concerns, and don’t be afraid to push for answers.
• Trust your instincts. You know your body best—keep listening to it.

View more tips for getting a diagnosis here.

Building a Supportive Community

Makenzie’s involvement with the Autoimmune Association’s Young Adult Advisory Council has provided her with a strong support system. Before joining the council, she didn’t know anyone else her age with an autoimmune condition. While her friends and family were incredible, there’s something uniquely comforting about connecting with peers who truly understand.

Now, as a teacher and coach, Makenzie shares parts of her story with her students and players. She talks with them about what an autoimmune disease is and why she sometimes wears compression gloves or needs to take breaks. “Kids are still full of curiosity and compassion,” she said. “They don’t have preconceived ideas about what disability looks like. That’s powerful.”

Her biggest hope? That her story shows others that disability doesn’t mean defeat. “It inspires me to get up on the hard days to show them that it can be done. And it teaches them that on the days you’re not at your best, you still show up and give what you can. You can still be kind. You can still care.”