It’s no secret that the American healthcare system is a flawed and expensive institution. In 2014, following the passage of the Affordable Care Act, 33 million people remained uninsured (Smith and Medalia, 2015). That same year, the United States spent a total of 3 trillion dollars on healthcare and two years later, the state of healthcare still remained critical (Health Expenditures, 2016).
Living with a chronic or undiagnosed disease is a grueling, endless battle that leaves you clinging to the remnants of your sanity. The symptoms are incapacitating, the financial strain is crippling, and the emotional toll it takes is a beast unlike any other.
The emotional destruction is almost a rite of passage for the chronically ill patient. You may turn to family and friends for support, but quickly find that no one understands your plight. During your darkest moments, their indifference can feel like a betrayal. Where do you go from there?
As any patient will tell you, having a rare or undiagnosed illness is immensely difficult. Doctors don’t know how to help you, and there are very few resources available. It can be crushing. As you feel yourself fall apart every day, fighting for a diagnosis can become extremely discouraging.
When you stop and think about it, the human species is the ultimate variety pack. We embody a collection of physical features in a staggering array of combinations. In all their diverse glory, though, most people are dissatisfied with at least one of their features. Some want a smaller nose or a flatter stomach. Others want to be taller or to have bigger muscles. Some yearn for thick, luscious hair, while others dream of a movie star smile. Despite these insecurities, people generally go on living their lives.
Imagine the sun’s scalding rays beating down on your back. As you will your legs to continue moving, every step threatens to betray you. Rivers of sweat streak your skin, stinging your eyes. As the blinding daylight obscures your vision, your heart hammers in futility. Your body weakens, and you question your resolve to continue. After all, in this race, there is no finish line.
Living with an undiagnosed disease is a heartbreaking battle that pushes you to the brink of madness. It drags on for years or even decades, eroding your life from within. When an unidentified illness invades your body, it also disrupts your life. No one believes you, no one can help you, and you have nowhere to turn. You are lost and defenseless, stranded in your own hopelessness.
“Same story, different day.”
That’s my default response when people ask me how I’m doing. And it’s the truth.
When I last detailed my grueling diagnosis journey, it had ended on a hopeful note. There was one remaining obstacle, however. I still had to confirm CrowdMed’s suggested diagnoses with my doctor. But I can’t afford a doctor or health insurance, so I wasn’t sure how to move forward.
“But you don’t look sick!”
Chronically ill patients hear this phrase again and again from friends, family, and colleagues alike. People assume they’re making a valid argument, when it is nothing more than a biting attempt to invalidate your illness and discredit your suffering. Rooted in ignorance, it does nothing but create resentment.
Diagnosis Spotlight: Vascular Ehlers-Danlos Syndrome
February of 1996 was the beginning of the end for David Bowen and his family. When the 13-year-old began experiencing abdominal pain and vomiting, his mother Cathy drove him to the hospital. There, doctors diagnosed him with a perforation of the sigmoid colon with peritonitis. The surgeon performed a colostomy (Bowen, n.d.).
Eight days later, an intern began taking the staples out. But “the skin started spreading apart in the middle and bleeding like a fresh wound” (Bowen, n.d.). Cathy voiced her concerns, but the surgeon didn’t listen. It took David almost a month to recover, but no one knew why.
Diagnosis Spotlight: Lipedema
Imagine living with a disease that no one understands. Instructors do not teach it in medical school, and less than three percent of physicians are aware of it. It mimics obesity in the arms and legs, but creates pain, fatigue, easy bruising, swelling, and inflammation. It only gets worse over time, leading to permanent damage. Treatment is complicated, too. Many doctors do not offer it, and insurance companies often do not cover it. While lipedema can be a daunting condition, the experience is slowly getting easier.
Dr. David Amron, MD and his patient, Crystal Blount. Dr. Amron, a dermatologic surgeon, is “the leading lipedema treatment specialist” who “has established the most effective treatment for lipedema known today” (Amron MD, 2015). Blount, his patient, is a passionate advocate for others like herself with the disease. Together, they are fighting the stigmas of lipedema.