Michelle Freret Prather

When I was in my early thirties, I began to have spells of profound weakness and sudden gastrointestinal distress. I was told by a parade of doctors that my tests were normal and that all working mothers were tired.  I experienced significant weight loss and worsening asthma. I was finally diagnosed with Addison’s disease, a rare disease that affects the adrenal glands. Under normal circumstances, the adrenal glands produce cortisol, which regulates critical bodily functions. My adrenal glands were producing just enough cortisol to sustain life, but if my body was challenged by infection, dehydration, overexertion, excessive heat, injury, or emotional stress, I could have an adrenal crisis and die. 

My health journey didn’t end there. I was alive, but I continued to feel sick and exhausted, along with a myriad of other health problems. Two endocrinologists and 10 years later, I was diagnosed with autoimmune polyglandular syndrome type 2, a rare disease that causes the body to attack the adrenal glands, thyroid, and the cells in the pancreas that make insulin, and in some cases, like mine, the ovaries as well. I was diagnosed a few years later with an aggressive form of psoriatic arthritis that affects my joints and spine. I have had many surgeries, including two spinal fusions. I take medication five times a day, get IV infusions every six weeks, and experience some level of pain every day from the orthopedic damage caused by my arthritis. I sometimes experience profound fatigue if my medication for my endocrine disease isn’t exactly right.  

I advocate because conditions that don't have a cure and reshape every facet of existence, don't fit the model of treatment in traditional medicine. A chronic disease isn’t a temporary infection that can be treated with a pill, nor can it be eliminated through diet and determination. It’s complex, often progressive, and deeply personal, blending physical breakdowns like pain, fatigue, or dysfunction with emotional and social upheaval such as grief or isolation, not to mention the financial burden of living with a chronic disease. Patients are often trapped in a healthcare system that demands they cope without real support. Chronic disease management should combine the science of diagnosis and treatment with support that fosters health and resilience by helping patients harness strengths, find meaning, and build tools to find joy and hope despite their medical challenges.