Invisible Illness: When Others Can't See Your Pain

Life with a chronic condition like fibromyalgia or chronic fatigue syndrome can be frustrating in many ways, including the fact that your physical pain isn't visible from the outside.People who break their arm, throw out their back, or experience another form of injury may be in rough shape, but others can see their injury and understand their limitations.

But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are "invisible illnesses," explaining what's wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don't understand what's wrong with you.


The Challenges of Invisible Illnesses



This was certainly the case for Allison Bigman, a 46-year-old New Yorker who has lived with chronic fatigue syndrome for more than 15 years. Her symptoms were so overwhelming at first that she had trouble managing them. Lack of understanding of the pain she was going through meant that she had to quit her job. Then, she noticed that many of her friends stopped calling or stopping by. "The disease changes you, and many people just don't understand it and can't handle seeing you that way," says Bigman.


The social isolation and challenges faced by Bigman are not unique among patients with fibromyalgia, chronic fatigue syndrome, or similar health issues. These conditions can be difficult to prove, and workers' compensation and personal injury cases can become "expert versus expert," with no one winning. And patients frequently get a lack of sympathy from family members and doctors alike.


Unfortunately, doubt is not the only uphill battle that people with "invisible illnesses" like fibromyalgia, chronic fatigue syndrome, and arthritis have to climb. Peter Bongiorno, ND, a naturopathic physician with InnerSource Health in New York City, says that they often have to fight simply to get access to handicap services or even help from their doctor. "Oftentimes doctors will recommend the patient visit a psychiatrist, their partners tell the patient to basically ‘learn to deal,' and bosses and co-workers view the patient as a chronic complainer," he says.


This lack of belief in the illness can affect people financially as well. "Some unscrupulous insurance companies use this medical confusion to avoid paying people the health and disability insurance benefits they paid for," says Jacob Teitelbaum, MD, director of the Fibromyalgia and Fatigue Centers and author of Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now. "This can leave people impoverished as well as crippled."


How to Cope With the Challenges of Invisible Illnesses


There are a few steps you can take to turn doubters into believers when facing the challenges of invisible illnesses like fibromyalgia, chronic fatigue syndrome, arthritis, or other types of chronic pain.


Start with your doctor. The solution is quite simple, says Dr. Teitelbaum. "If you have to convince your physician you have a real disease, you are seeing the wrong physician. Holistic physicians or pain specialists belonging to the American Academy of Pain Management are more likely to be familiar with these conditions."


Next, try talking to your co-workers and loved ones. Bigman had success in explaining what was wrong with her by having the people in her life read up on the medical literature about her condition.


Another way to turn skeptics into believers, says Bigman, is to have a loved one attend a doctor's appointment with you. "Sometimes, if they can hear it from a doctor that you are suffering from chronic fatigue syndrome, that will help them accept and start to understand what's wrong with you," she says.


Bigman's attempts to make her family understand her chronic fatigue syndrome were successful. She now relies on the help of many friends and family members and is working closely with several doctors to manage her illness and recover from it. Still, she adds that even if your loved ones begin to understand your invisible illness a little better, they can never completely relate to what you are going through. That's why finding a support group of people with your same condition can be so helpful. Ask your doctor about support groups in your area or check online for more information.

By Wyatt Myers

Medically reviewed by Pat F. Bass III, MD, MPH