Patients with Autoimmune Disease Report Neglected Debilitating Fatigue in AARDA’s Survey

Patients with Autoimmune Disease Report Neglected Debilitating Fatigue in AARDA’s Survey

The American Autoimmune Disease Related Diseases Association (AARDA) recently announced in a press release the results of an online national survey concerning fatigue associated to autoimmune diseases. In total, 7,838 patients with autoimmune disorders participated in the survey conducted online between February 7 and March 2, 2015.

Autoimmune disorders are characterized by an overreaction of the body’s own immune system that leads to the attack of healthy tissues, such as joints and organs, resulting in inflammation, pain, fatigue, disability and often in tissue destruction. Women are more prone to develop autoimmune diseases than men. The causes underlying these diseases are poorly understood.

In the survey, 95% of the respondents were female, with 46% of them in child-bearing age. In total, 82 autoimmune disorders were reported, such as rheumatoid arthritis, systemic lupus erythematosus, scleroderma, vasculitis, psoriatic arthritis and ankylosing spondylitis, among others.

Fatigue was reported by 98% of the respondents. 89% of the patients referred to it as a “major issue” in their lives, 68% reported that the fatigue experienced actually prevented them from completing simple everyday tasks, and 59% mentioned that fatigue was “the most debilitating symptom of having an autoimmune disease.” Fatigue was found to impact almost every aspect of the patients’ lives, where 89% reported a negative impact in overall quality of life, 78% in the overall career path or ability to work, 78% in the romantic life and 74% in family life.

The survey also revealed that fatigue exerts a significant impact on the mental and emotional well-being with patients reporting an increase in emotional distress (88%), sense of isolation (76%), anxiety (72%) and depression (69%). Remarkably, 87% of the patients mentioned they had reported fatigue to their physician, yet 59% of them were not prescribed or recommended any treatment for this symptom, indicating that fatigue is still largely ignored by healthcare providers as a symptom in autoimmune disease patients that also needs to be addressed.

“It’s difficult for other people to understand our ongoing fatigue when it can’t be seen by them. It’s so hard just trying to get others to really, really understand how very tired you are sometimes — even our own doctors don’t understand. One wonders if even our doctors may think we are for the most part just mental cases and/or whiners,” said an autoimmune disease patient in the survey. In fact, 70% of the patients reported feeling negatively judged by others due to their fatigue.

“In this busy, busy world, it’s normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal,” said the President and Executive Director of AARDA Virginia T. Ladd in the press release. “The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”

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