National Fibromyalgia Awareness Day: Acknowledging the Invisible

May 12^th is National Fibromyalgia Awareness Day, a national attempt to bring this "invisible disease" into the spotlight and dispel the myths and misunderstandings which plague the FMS community. The Mayo Clinic describes Fibromyalgia as "a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points - places on your body where slight pressure causes pain."

Diagnosis of the condition is difficult, as no blood tests or screenings exist to confirm the presence of Fibromyalgia. Instead, patients are subjected to a series of tests to rule-out other conditions such as Lupus and Rheumatoid Arthritis, in addition to confirmation of the presence at least 11 of 18 tender points located on the body; see a diagram here.

Fibromyalgia is recognized under the Americans with Disabilities Act (ADA), but acceptance into a Disability program is both a difficult undertaking and a tough choice which many FMS patients choose not to endure. Approval can prevent FMS patients from returning to the work force, and many Fibromyalgia sufferers choose to keep employment and careers as long as possible. For more information about FMS and the ADA visit The National Fibromyalgia Partnership, INC.

Even with the difficult path to diagnosis, paired with the permanent and often extreme widespread pain and fatigue, the most challenging part of living with Fibromyalgia is often unrelated to the medical implications: the prejudice and intolerance of people without the condition. FMS is an "invisible disease," meaning that people with the condition are not outwardly recognizable. Any person in line at the local grocery store could be an FMS sufferer; this invisible quality leads to a lack of compassion, and a refusal to acknowledge the condition in many people.

Since I was diagnosed at 15, Fibromyalgia has continuously changed definitions. Doctors and researchers have argued over the causes of FMS-which are still unknown-and have theorized that the cause of the condition is everything from a mental disorder caused by a chemical imbalance, to a defect in muscle tissue and regeneration, to a neurological disorder. This inability to explain the origin of the disease, paired with the difficulty in effectively treating symptoms with no known origin, has only increased the stigma that Fibromyalgia is "all in the patient's heads."

The general disbelief in the condition, and the lack of support or acknowledgement on the part of family members, friends, and coworkers of Fibromyalgia patients, increases the difficulty in living with the disease. Sites such as Facebook and Twitter have had countless posts throughout the afternoon from the FMS community in attempts to further the awareness of the disease, only to occasionally receive responses such as: "(Censored) Fibromyalgia Awareness! They shouldn't run so many commercials on my TV!" Unfortunately, this quote is a perfect example of the attitudes and animosity many FMS sufferers encounter from day to day.

Numerous online support groups, information websites, and National awareness organizations have developed over the last few decades. The Fibromyalgia Network continuously updates in the latest discoveries, theories, and treatment options available to FMS patients. The Colorado Fibromyalgia Network, founded by Lannette Johnson in Denver, Colorado, is just one example of an FMS support group dedicated to improving the lives of Fibromyalgia sufferers in their area. The National Fibromyalgia Association has an upcoming events calendar with links to National Fibromyalgia Awareness Day activities throughout the USA.

Awareness, acceptance, and compassion are difficult goals for any collective group of people to accomplish-and Fibromyalgia is a real condition, with real people suffering from the complications. This means living with some degree of pain or discomfort, stiffness, fatigue and tenderness (just to name a few symptoms of FMS) daily; this not only effects the quality of their lives, but also the loved ones who try to accommodate the needs of the Fibromyalgia patients in their lives. Children who can't quite understand why their mother can't keep up with them at the park or friends who try to be understand and not take it personally when their pal isn't up to a trip to the mall.

The Mayo Clinic reports that "Fibromyalgia occurs in about 2 percent of the population in the United States." With statistics such as that, it is difficult to imagine that anyone doesn't know someone who suffers from this disease-likely without even realizing it. If you do know someone who has been diagnosed with the Fibromyalgia, take a moment to consult the research and facts before deciding that this "invisible disease" isn't real enough to be taken seriously; a personal diagnosis of the disease shouldn't be required for compassion and understanding.

Sources:
The Mayo Clinic, "Fibromyalgia"
The National Fibromyalgia Partnership, INC, "Home of Fibromyalgia Frontiers Journal"
Colorado Fibromyalgia Network, "Website"
The Fibromyalgia Network, "News"
The National Fibromyalgia Association,"Welcome"