INVISIBLE ILLNESS YOU MIGHT NOT BE AWARE OF

An invisible illness is a condition that is, well, invisible to the casual observer. These hard-to-diagnose illnesses often go undiagnosed for years and include conditions such as myalgic encephalomyelitis—also known as chronic fatigue—and fibromyalgia.

How To Cope With Having Invisible Illnesses

Every patient and healthcare provider we spoke to said that women with invisible illnesses must be their own advocates. If something seems "off," don't ignore it.

Record Your Symptoms

Saakshi Khattri, MD, a dermatologist and rheumatologist at the Icahn School of Medicine at Mount Sinai in New York City, recommended keeping track of symptoms. "Recording specifics in a diary is always a good idea, especially making note of the location of pain if you have it." Duration of symptoms and the circumstances around which they occur is important, too, Dr. Tedeschi added. "For example, if your symptoms flare up when you also have an infection like a cold or UTI, that's useful information," Dr. Tedeschi explained.

Debilitating joint and muscle pain, fatigue, migraines, and other chronic “invisible” symptoms frequently characterize autoimmune and autoimmune-related disorders, such as lupus, rheumatoid arthritis, fibromyalgia (FM), and chronic fatigue syndrome (CFS), which is also called myalgic encephalopathy/encephalomyelitis or chronic fatigue and immune dysfunction syndrome (CFIDS). Although all individuals with autoimmune disorders usually encounter skepticism about their invisible symptoms from others, conditions such as lupus or rheumatoid arthritis are well-established—albeit sometimes difficult—medical diagnoses, and the general public is aware of them as such. Often, simply informing skeptics about a medical condition is enough explanation.

However, individuals with FM or CFS are not so fortunate. “Not all chronic diseases are equal. Some are more accepted than others,” says Patricia A. Fennell, MSW, LCSW-R, the CEO of Albany Health Management Associates, Inc., which provides counseling and case management for chronically ill individuals, consulting and education for their employers, and professional training for the clinicians involved in care of the chronically ill.