Meet Robert: Still Undiagnosed After Four Years of Searching

Today is Undiagnosed Rare Disease Day, a day to raise awareness for undiagnosed rare diseases and the emotional, physical, and financial impact they have on the lives of the patients and their families. Robert is one of many people suffering with an undiagnosed disease. He’s an 18-year-old high school student in Fort Collins and experiences severe chronic pain, limited mobility, inability to balance, hypersensitivity and extreme brain fog.

Today we share his story:

“This isn’t something I typically share, but today I felt like I should. Most people see me as a smiling, confident kid who likes to talk and who sometimes uses a crutch for some weird nerve issue but usually seems fine. What they might not know is I sometime have trouble walking because with few steps, there’s stabbing nerve pain that can bring me to the floor. Sometimes it takes me four tries to get my notebook out of my backpack because I’m overwhelmed with pain and exhaustion. Sometimes I’m too tired and it hurts too much to make it to the door. Sometimes I cry.

I don’t share any of this to appear tough or to be seen differently. That’s actually one of the hardest parts of my ordeal: when I’m seen first as a person in pain, rather than a just a person. I’m sharing this because it shows I feel broken and I’m struggling to deal with it all the time.”

Robert is one of as many as 25 million Americans who suffer from an undiagnosed condition. Often, the diagnosis – if ever made — is one of approximately 7,000 rare diseases, many of which can be autoimmune or autoimmune-related. The difficulty in diagnosing rare diseases stems from many physicians’ unfamiliarity with these diseases and the specialized diagnostic tools that are necessary to identify the condition.

For sufferers of an undiagnosed rare disease, every day is challenging. Today, on Undiagnosed Day, we aim to bring visibility to these daily challenges. We encourage anyone who is experiencing unexplained symptoms to keep fighting and to keep searching. No matter how hard it gets, know that there are many organizations, including Autoimmune Association, working hard to improve the future for undiagnosed patients and increase awareness of rare diseases. Through awareness, research, education, and advocacy, Autoimmune Association is leading the fight against autoimmune disease and we support the entire community of individuals searching for a diagnosis.